HERE FOR YOU
Our Helpline Care Navigators are here to support everyone affected by PSP & CBD. Each Helpline Care Navigator has a designated area (see map) where they provide proactive support, including:
• Information on all aspects of living with PSP & CBD, such as symptom management, benefits and entitlements and everyday living
• Emotional and practical support
• Contact details for local support, which may include Support Groups
• Information about how PSPA can support you
• Information about health and social care and how to access these services
• Signposting to other sources of information
• Referral for non-means tested benefits applications via Department of Work and Pensions (DWP) home visiting service
• Supporting evidence about PSP & CBD for Blue Badge applications and Continuing Healthcare applications
• Provide specific information written for health and social care professionals and access to Education Volunteers.
Our Helpline and information service is available Monday to Friday 9am to 9pm.
Tel: 0300 0110 122 or email helpline@pspassociation.org.uk
Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN
CATHY MOUGHTON
JULES BROWN
JAVERIA SHAFIQ
WELCOME
The General Election took us all by surprise this May, but it enabled PSPA to focus our Awareness Week on writing to future MPs about the needs of carers of people living with PSP & CBD. Our new policy and influencing work is dependent on PSPA being able to build relationships with decision-makers in health and social care and in the parliaments across the UK, and this was our first step in doing this.
Thank you to all of you who wrote to your parliamentary candidates. Please send any responses you get to communications@pspassociation.org.uk. The feedback we get from supporters tells us how important awareness raising is. It’s not an easy task and there are no quick fixes, but we are committed to making progress in this area.
Coupled with the letter writing there has been a great response to our Walks for Hope, with the number of walks more than doubling from 2023 to 2024. We are excited that thanks to your support, we exceeded our matched funding target of £30,000. This means the events in total have raised more than £70,000 this year. As always PSPA supporters deliver when asked; every walk helps not just to raise much needed funds but also raises awareness of PSP & CBD.
Whilst we have been expanding our influencing work and increasing our spending on funding research, we remain committed to developing our information and support services. It’s essential we get the balance right between the three main strands of our work. Our new counselling and online exercise classes have got off to a flying start. The sessions are full and we are investigating if we can release more funds to increase the number of people who can access the counselling services. We have found great partners in RareMinds and Neuro Heroes and are grateful to the National Lottery Community Fund for providing the funding to start up these new streams of work.
Rebecca Packwood PSPA CEO
USEFUL CONTACTS
Main contact 01327 322410
info@pspassociation.org.uk
Helpline 0300 0110 122
helpline@pspassociation.org.uk
Fundraising 01327 322414
fundraising@pspassociation.org.uk
Volunteering 01327 368597
volunteering@pspassociation.org.uk
Rebecca Packwood, CEO 01327 322413
rebecca.packwood@pspassociation.org.uk
Carol Amirghiasvand, Director of Service
Improvement and Development | Deputy CEO 01327 356137
carol.amirghiasvand@pspassociation.org.uk
Helen Chapman, PSPA Matters Editor 01327 356135
helen.chapman@pspassociation.org.uk
Megan Hodgson, Research Coordinator 01327 322418
research@pspassociation.org.uk
PSPA NEWS
NEW CHAIR APPOINTED TO PSPA RESEARCH COMMITTEE
We are delighted to welcome the new Chair of the PSPA Research Committee, Professor Karen Morrison. Professor Morrison has been an active clinical academic for many years with internationally recognised research expertise in genetic and clinical aspects of neurodegenerative disease, with a focus on Motor Neuron Disease (MND) and on genetic aspects of Parkinson’s disease.
She is currently Dean of Education in the Faculty of Medicine, Health and Life Sciences at Queen’s University, Belfast, and led the Belfast Regional MND service until last year. Professor Morrison took over as Chair of the Committee on 1 August 2024. We would like to express our gratitude for Professor Nigel Leigh who has chaired the committee for the last four years (page 14). We are all looking forward to working with Karen and advancing our research work.
#MYNEUROSURVEY NOW OPEN
#MyNeuroSurvey is the largest patient experience survey of people with neurological conditions and is run by The Neurological Alliance every two years. If you are living with PSP or CBD, or care for someone living with the condition, please do complete the survey. It is open until 15 November 2024 and the results will help inform and influence the commissioning services for people with neurological conditions. It will also help PSPA to develop its own support services and policy and influencing work. To complete the survey visit www.neural.org.uk/share-your-
THE IMPACT YOU
HELPED TO CREATE 2023 was a year of growth and investment which saw PSPA launch new services and invest in research and awareness. Our new Impact Report details the developments and achievements that were made possible thanks to your ongoing support. In the report, you will find details of what we have achieved against our three strategy goals, which focus on:
• Support and Information
• Research and Awareness Raising
• Involvement
You can also read accounts from PSPA volunteer, David Pugh, and PSP & CBD researcher, Dr Ed Jabbari, about how PSPA has supported them and how they are helping the community in return. View the achievements you have helped make possible, on our website at www.pspassociation.org.uk/about-us/the-differencewe-make/
HELLO TO LYNN
Meet Lynn O’Gorman, our new Head of Fundraising. Before joining PSPA, Lynn worked for her local hospice in Milton Keynes for 16 years, covering all aspects of fundraising. Following that Lynn worked for Age Concern in Slough.
Lynn said: “When I applied for the role I’d never heard of PSP or CBD. Researching both conditions I could see how little is known about them. This really resonated with me because when I was 31, I was diagnosed with Multiple Sclerosis (MS). Unlike people with PSP & CBD, my diagnosis was quick and it was followed by a great deal of support.
“I’m grateful to have experienced good care and I want to see the same level of care given to people with PSP & CBD. My role in this is to secure funding so that the charity can continue to fund research, influence the care people receive from the NHS and statutory services and develop PSPA support services.
“Just a few weeks after I joined I was privileged to cheer on our largest ever #TeamPSPA at the London Marathon. What an amazing group of people! This is a very special community to be part of and I’m determined to do whatever we can to support everyone affected by these devastating conditions.”
SUPPORTING PSPA AT CHRISTMAS
ROYAL GARDEN PARTY
A small group of volunteers and supporters of PSPA attended a Royal Garden Party at Buckingham Palace in May. The invitation came from our Royal Patron the Duchess of Gloucester who asked PSPA to nominate four people.
Bruce Cleveland who is living with CBD, attended the event along with his wife Neda. Since Bruce’s diagnosis the couple have devoted themselves to raising awareness. Neda said: “Despite all the water (we were damp down to our underwear) we had a really enjoyable and unique experience. It was so lovely to meet CJ and Chloe too and we talked with the Duchess of Gloucester. It was lovely to get dressed up and go out with Bruce, a fun and memorable day for us.”
Caroline Jeffries-Shaw (known as CJ), a speech and language therapist, is a volunteer on our Helpline CJ said: “I was both nervous and excited, but most of all I was honoured to be representing PSPA. It was a once in a lifetime opportunity and something I’ll never forget."
Chloe Cripps is also a speech and language therapist and has volunteered for PSPA for many years. Chloe said: “Attending the garden party was a real privilege. Buckingham Palace grounds were beautiful, even in the rain. It was a very wet day, but we were still able to enjoy the unique experience, shaking hands with members of the royal family, enjoying afternoon tea and meeting amazing people from all over the UK. We met with the Duchess of Gloucester who was very interested to find out more about PSPA and the people the charity supports.”
On the back cover of this edition of PSPA Matters is our Christmas Catalogue, featuring this year's festive cards and our ever-popular hummingbird tree decorations. On page 36 is our Bauble Appeal to raise money for our Helpline and Information services. However you choose to support PSPA this Christmas, it really does make a huge difference all year long.
CAROLINE (CJ), CHLOE AND BRUCE
LYNN O'GORMAN
A TRIBUTE IN LOVING
MEMORY OF A BELOVED
SON,
BROTHER AND FRIEND
Five friends who met when studying at the University of Bath embarked on a 130 mile walk in memory of their friend Francis Boateng-Frimpong.
KIAN SADIGH, MATTEO MANESCHI, ADE THOMPSON, KWAME KWASI AND AARON WEBBER
Kian Sadigh, Matteo Maneschi, Ade Thompson, Kwame Kwasi and Aaron Webber travelled from the University of Bath, where the friends all first met, to Francis’ home in London on what would have been his 27th birthday.
As well as taking on the challenge to honour Francis’ memory, the friends also wanted to raise money for a cause close to his heart – PSPA raising over £12,000 for the charity. Francis became closely connected to PSPA following his mum, Comfort Asante’s diagnosis of PSP in June 2021, when he became her carer.
Talking about the challenge, Kian Sadigh said: “Since we met at University in 2015, we’ve become a really close group of friends, and remained close even after we all graduated. Francis always had a smile on his face. And he was always joining initiatives to help people. At the funeral everyone talked about how open and available he was to people. Francis often spoke about his mum and how PSP was affecting her. He wanted to do whatever he could to make her life easier.”
Matteo Maneschi continues: “Francis leaves a big hole in our group. He was a genuinely kind person. Everyone only has positive things to say about him. We met as boys, and grew into men together, it was a beautiful journey that we are proud to have shared with Francis. We wanted to do something as a group of friends to celebrate his life. During the walk, it felt like Francis was with us, sending signs encouraging us to stay strong.
“Francis’ best friend Fars Ghoitom was instrumental in the organisation of the fundraising campaign and coordination of the last 10km of the walk, where we were joined by 30 more of Francis' friends, a beautiful mix from both school and university. It was a beautiful way to finish.”
The friends arrived back at Francis’ family home to a special welcome party arranged by Vanessa, Francis’s sister. Vanessa said: “When Francis’ friends said they wanted to raise money for PSPA in his memory I was so touched. I was blown away by their idea to walk from Bath. It was such a tribute to Francis and showed how much he was loved.
“We did a balloon and lantern release. It was beautiful. Mum has been poorly since Francis died and has been in hospital for a lengthy stay, but the hospital let her out for a couple of hours so she could welcome the boys home and watch the balloons and lanterns flying off into the sky. It was lovely to have Mum and Dad both there for the moment.”
When Comfort first received her diagnosis it sent the family into shock as Vanessa explains: “Mum’s diagnosis has been difficult for the family to deal with. It’s been so hard to watch the gradual decline of our independent and spirited mum. She was a carer herself, always looking after others and always on her feet. Now she uses a Zimmer frame and is losing her speech.
“I can’t imagine how frustrating life is for Mum. Not being able to do anything herself and not being understood. When you first hear a loved one has PSP two words dominate – incurable and untreatable. It can be so hard to hold onto hope. But Mum is a fighter. She continues to fight to stay as mobile as possible and is still keen to go to the park every day for a walk. She is still her funny, opinionated self, she still loves to shop in Zara and she still has a wonderful laugh. But of course, as well as dealing with PSP, she is grieving the loss of her son.”
“FRANCIS LEAVES A BIG HOLE IN OUR GROUP. HE WAS A GENUINELY KIND PERSON. EVERYONE ONLY HAS POSITIVE THINGS TO SAY ABOUT HIM."
VANESSA, FRANCIS AND COMFORT AT PSPA'S FAMILY FUN DAY
“WE ALSO REGULARLY ATTENDED THE MONTHLY ONLINE SUPPORT GROUP. THOSE MEETINGS HAVE BEEN SUCH A LIFELINE AND WE LEARNT SO MUCH FROM CHATTING TO OTHERS."
Following Comfort’s diagnosis, despite working full-time Francis focused on doing anything and everything that would make her life manageable. He attended all medical appointments and made sure the council made adaptations to the home. Vanessa said that “He’d meticulously document the doctors' recommendations and would be on the phone to the council to secure vital pieces of equipment. For a short period of time when I moved out of the family home, I’d help out in the evenings and on the weekends, but Francis played more of a ‘main carer’ role for Mum.
“Francis and I have called the PSPA Helpline a number of times. The Helpline has been such a support to us and it’s comforting to know that we can call whenever we want information or to bounce ideas around with someone familiar with PSP.
Information from the Helpline helped us to feel well prepared ahead of medical appointments for Mum. Like most people affected by PSP, we’ve had to educate so many health professionals about the condition. The information we’ve received from medical professionals has been sparse. Whereas PSPA has been a blessing. For a small charity they provide so much valuable information and support.
“We also regularly attended the monthly online support group. Those meetings have been such a lifeline and we learnt so much from chatting to others. We were having problems with the care agency we were using. Someone at the group gave us the number for the agency they use so we moved to the same agency and and have had no problems since.”
Francis, Vanessa and their mum attended PSPA’s Family and Friends Day in Windsor last year. That day now holds dear memories for the family, of a time when they were able to spend a couple of days together away from home. Vanessa said: “It’s nice to look back on the Family and Friends Day. It was a welcome break for all three of us to get out of London. We had full trust and faith that accessibility will have been considered and it was. We stayed overnight which was really lovely for Mum. Everyone we met had something helpful to share.
“The activities were fun, and Mum loved the music and dance therapy sessions. Francis bought mum a glass hummingbird which now has extra special significance. It reminds us of the day and how we were able to spend it together. Sadly, Francis unexpectedly died just a few months afterwards, leaving the family devastated. I’m now Mum’s main carer but I no longer have Francis to share ideas with or discuss various decisions we must make. We all miss Francis. When life gets dark there are some people who bring the light. My younger brother Francis was one of those people who shone. He’d have been touched that so many people have raised money for PSPA in his memory.”
THANKS FROM FRANCIS' MUM
Comfort wishes to express her gratitude towards PSPA for the support they have shown her over the years and a huge thank you to Francis’ friends. Comfort notes that what Francis’ friends did, brought her great comfort and eased some of her pain.
THANK YOU FOR HELPING US SHOW #WECARE
This year our annual PSP & CBD Awareness Week shone a light on carers of people living with PSP & CBD through our #WeCare campaign.
Carers provide incredible support to people living with the conditions – and we believe they deserve a better deal. It was great to see so many PSPA supporters taking part in the #WeCare campaign and helping raise awareness of PSP & CBD.
The #WeCare campaign is all about raising awareness of PSP & CBD through the stories of carers of people living with the conditions – and calling on the Government to give carers a better deal. We’re supporting calls made by Carers UK and others for an increase to Carers Allowance and a new payment for older carers, for a legal right to respite breaks for carers, and for carers to be treated better by our health and care system.
It's been great to hear from so many supporters who’ve shared their stories and supported the campaign by writing to their General Election candidates, shared the campaign on social media or with their local media, or taken part in a Walk for Hope in their local community. Almost 300 of you downloaded our template email this July to let your candidates know about the campaign. Over 100 of you joined the conversation on social media by downloading PSPA’s template press release and social media resources about the campaign.
GET INVOLVED
DANNY’S STORY
“It was three months before I had an acknowledgement of my carer’s assessment application. You feel completely forgotten.”
PSPA supporters took part in 25 Walks for Hope across the country, raising an incredible £42,000 (this doesn't include the match funding element) – reaching our match-funding target of £30,000 that was pledged by a generous donor. The campaign also received great coverage in the press, with our Director of Policy and Influencing Mark Jackson being interviewed on Heart FM Home Counties and BBC 3 Counties Radio. Supporters also shared their stories with Rare Revolution Magazine, MK Citizen, Kent Online, Wellington Today, Business Cornwall and BBC Radio Essex.
298 Downloaded our template letter
8 articles in local and national media
29 Walks for Hope took place, raising over £42,000 plus match funding
20,550 views on social media
CHRISTINE’S STORY
“I applied to a local counselling service, but I was told I wasn’t bad enough to warrant support. I felt a bit unheard.”
PSP & CBD Awareness Week is our flagship awareness-raising event of the year – but it’s not the only way to help PSPA raise awareness of the conditions! We’ll be continuing to campaign year-round. If you’d like to get involved then visit our website to learn how. www.pspassociation.org.uk/information-and-support/awareness-tools
POLICY AND INFLUENCING UPDATE
Our Director of Policy and Influencing, Mark Jackson, reflects on a successful PSP & CBD Awareness Week campaign and on what will be taking place over the next few months.
Many people were taken by surprise when the recent General Election was called back in May. At PSPA, the snap election announcement saw us bringing our planned campaigning around PSP & CBD Awareness Week forward, as the week (17 to 23 June) fell in the middle of election season.
We launched our #WeCare campaign on 3 June after a busy week of getting everything ready for that earlier start date. Despite the earlier-than-expected election, we’d always planned to use Awareness Week this year as an opportunity to start a conversation with General Election candidates about PSP & CBD, by asking supporters to write to them. I want to take every opportunity to raise awareness of the conditions among the people who make the decisions that affect the lives of people living with them, and we didn’t want to wait until new MPs were elected to engage.
I want to thank every PSPA supporter who contributed to making the #WeCare campaign a success. Whether you wrote to your local candidates to let them know about the campaign, got in touch with your local newspaper or radio station, took part in a Walk for Hope in your community or shared the message of the campaign on social media, every action you took helped PSPA raise awareness of PSP & CBD and to make the case for improved support for carers of people living with the conditions.
Since joining PSPA I’ve been struck by how the system often makes it needlessly hard for family carers who are supporting people living with PSP & CBD – from inadequate financial support, to struggling to balance caring responsibilities with their own lives.
Your efforts this Awareness Week helped us make that case, and we’ll be continuing that conversation with policymakers in the coming months alongside our partners in the Care & Support Alliance.
Now that the election is over, we’re continuing our efforts to raise awareness of PSP & CBD among newly elected MPs in Westminster. Every MP in the country will be receiving a brand new PSPA resource to let them and their staff know about the conditions, the local support that their constituents can access if they’re diagnosed, and how they can support constituents with PSP & CBD in their role as MPs.
In the autumn, we’re planning to hold a drop-in event in Parliament where MPs can learn more about the conditions and how they impact people. Please do write to your local MP to ask them to attend – we’ll share more information on this soon.
In July, our partners at the Neurological Alliance launched the latest #MyNeuroSurvey – the largest patient experience survey of people with neurological conditions. The more people with PSP & CBD who complete the survey, the better the data will be and the more we can use it at PSPA to inform our future plans, and to lobby governments, decision-makers in the NHS and healthcare professionals for the changes that you’ve told us you want to see – faster diagnosis of PSP & CBD, better coordinated care and an end to postcode lotteries in care across the country. To take part in the Survey please go to: www.neural.org.uk/ share-your- experiences-with-my-neuro-survey/
RAISE AWARENESS
We’re always looking for opportunities to raise awareness of PSP & CBD among the people who make the decisions that affect your lives – if you’d like to get involved, look out for our regular e-news updates, or you can head to our website to learn more at www.pspassociation.org.uk/information-andsupport/awareness-tools
Thank you to everybody who supports our efforts to work towards that future – there’s a lot more to do but, together, I know we’ll get there.
MARK JACKSON
IMPROVED AWARENESS LEADS TO BETTER CARE
Improving awareness among health and social care professionals is a key priority for PSPA. We understand the difference improved awareness and understanding of the conditions can have on the care people receive.
Former District Nurse and Continuing Healthcare professional, Vicky Rees, shares why she is keen to support PSPA’s awareness goals after experiencing challenges herself when her mum was diagnosed with PSP.
“My mum was diagnosed with PSP in 2017, at the age of 74 after multiple years of appointments, tests and investigations. Despite being a District Nurse for more than 20 years and also working in Continuing Healthcare, I’d never heard of the condition before. Neither had my dad, a GP of over 40 years.
In fact, we were probably guilty of initially brushing her symptoms off as age related forgetfulness and doddery or related to other health conditions such as her arthritis.
“When we started to look for more answers to Mum’s changed behaviours and cognitive impairment, the GP was investigating each symptom separately, one-byone. And of course, being in the dark about conditions like PSP, we also didn’t know how all the symptoms Mum was experiencing could all be linked and add up to one thing.
VICKY WITH HER MUM
“When we did get referred to a neurologist after Mum developed a tremor in her arm, they were very helpful. Initially they suspected Parkinson’s although they admitted the symptoms weren’t what you would typically expect to see. As Mum’s symptoms progressed, the falls began, she had episodes of being unable to speak, and her mobility declined. Investigations also highlighted changes in her eyes. It was this change which initiated an MRI scan, which showed mid brain shrinkage and led to her PSP diagnosis.
“Since Mum had been seen regularly as a Parkinson’s patient, we felt we were well geared up to deal with most of her symptoms, so in that sense the diagnosis didn’t change much. But the PSP diagnosis brought a short life expectancy, and it was that element which was difficult to deal with.
“Dad was Mum’s main carer, mostly supported on a day-to-day basis by my sister who lived nearby. We are a supportive family and, although I lived away, I was around regularly, as was my brother. Initially Dad was coping OK, but Mum’s challenging behaviour and mood swings began to take their toll. Eventually we did persuade Dad to get private carers in to help twice a week, to give him some support and respite.
“I think the main challenge we faced though was firefighting the symptoms as and when they appeared. Due to a lack of knowledge and understanding of PSP, the local community team weren’t really geared up to look ahead and prepare us. It was a case of doing the best we could as things became an issue, and we started struggling. But it shouldn’t need to get to that stage.
“I found PSPA towards the end of Mum’s illness. I wish I had found them sooner. I learned about their Study Days for health and social care professionals via their Facebook page and signed up to attend. Although I attended with my professional hat on, I couldn’t help relating the information and stories back to Mum.
“The Study Day was so useful in terms of bringing me up to speed on PSP, symptom progression and management, that I watched back recordings of previous days, keen to learn more. In hindsight, the lack of knowledge we had as a family, and in some pockets of the community team, had really hindered us. It’s quite easy to see now how improved awareness among health and social care professionals can, in turn, improve the support and experiences people living with the conditions have.
“After Mum died in 2021, I was keen to put my experience and new learning to good use. I really want to help PSPA raise awareness of PSP & CBD in the medical community and as part of that have joined their Health and Social Care Professionals Working Group. The group enables us all to share experiences and best practice, and also help PSPA review and develop information to help other professionals support people living with PSP & CBD better.
“Recently I have had a look over the information sheet the charity provides on Continuing Healthcare. I aim to support PSPA’s policy and influencing work, with my knowledge of Continuing Healthcare processes and procedures, in the hope of making improvements to the care and funding people can receive.
“I hope through my input I can help more professionals to at least have heard of PSP & CBD and keep it there as a pocket of information they can consider when they are supporting patients who are yet to be diagnosed. Just knowing PSP or CBD could be a possible diagnosis could make no end of difference.”
“I FOUND PSPA TOWARDS THE END OF MUM’S ILLNESS. I WISH I HAD FOUND THEM SOONER. "
VICKY WITH HER MUM AND DAD
THANK YOU PROFESSOR LEIGH
We
would like say a huge thank you to Professor Nigel Leigh, who has stepped down as PSPA Research Committee Chair.
Professor Leigh joined the Research Committee in 2020, utilising his experience as a leading Neurology Consultant and researcher, to ensure we funded the highest quality research. He also implemented a new Research Strategy and supported the launch of our £2 million Research Appeal.
Nigel said: “Serving as Chair of the PSPA Research Committee over the last four years has been challenging in all the right ways! I was lucky to join the Committee when my predecessor Professor Hugh Perry, alongside PSPA staff, and after extensive consultation with people living with PSP & CBD, had overseen the development of a comprehensive research strategy backed by rigorous oversight and governance.
“The scientific members of the Research Committee are all outstanding clinicians or laboratory scientists involved in PSP & CBD care and research. There is abundant enthusiasm, commitment and expertise to drive forward PSPA’s goal of transforming the experience of living with these devastating disorders.
“During my time on the Committee I’ve seen the research portfolio expand, national and international collaborations flourish, and new researchers join the field, encouraged and mentored by scientists and clinicians working on PSP & CBD. The challenge we face in finding effective treatments for PSP & CBD is formidable, but I’m confident that the Research Committee under the guidance of its new Chair Professor Karen Morrison, will rise to that challenge and continue to build an exciting and dynamic research milieu for the benefit of all people living with PSP & CBD. I wish the new Committee every success.”
FAMILY AND FRIENDS DAY
‘Good fun’, ‘very enjoyable’, ‘well organised’ and ‘informative’ were just some of the comments from those who attended our Family and Friends day in Leeds. Over 40 people attended the day in June, where they heard from experts in PSP & CBD care and research.
Dr Tim Rittman started the day with a presentation on Living with PSP & CBD: research and real life.
Tim gave an overview of the research he and the team at Addenbrookes are currently involved in. After a short break Hannah Roberston, Physiotherapist and Laura Loxley, Occupational Therapist explained the role of community therapists while their colleague Becky, a Speech and Language Therapist recorded a video explaining her role in supporting people with both conditions.
After lunch we were joined by Cheryl and Chris from the English National Ballet who led us through a ‘Dance for Parkinson's’ workshop. A chance for some movement and song based around their current rehearsals for Carmen. A carefully planned session meant everyone living with PSP & CBD could join in and it was wonderful contrast to the information focused sessions in the morning.
Our next Family and Friends Day will be held in October in the South West. For more information please visit www.pspassociation.org.uk
MY LONDON MARATHON JOURNEY
I swore I’d never run a marathon, but inspired by Moth Winn who walked last year’s London marathon to raise money and awareness for PSPA, I decided to give it a go.
I knew I had to prepare well. I contacted a brilliant trainer and also found a local physio as I knew I wasn’t overly strong or fit, and had lots of niggles that I thought might hinder my fitness journey.
As well as improving my fitness, I also needed to crack on with my fundraising. I set my target at £2,000 and shared my Just Giving page on social media, with a bit of background on how CBD had affected Mum. Almost without exception no one knew what CBD was, even if they had known Mum was ill.
I had no idea just how well social media would work and within a matter of weeks, I’d pretty much hit my initial target. So I decided to up it to £2,500, and then had to up it again. I ended up raising over £4,200truly amazing.
Throughout all of this, I was part of a brilliant #TeamPSPA WhatsApp group where we could all share our training highs and lows. It was so lovely to be able to support each other as there were some experienced marathon runners alongside those of us who’d never attempted one.
The fear of injury or illness in the three weeks up to marathon day was all consuming. Apart from the training itself which was going well, everything else was somewhat of a blur as ‘maranoia’ took hold!
A couple of days before race day I headed to London to join the amazing Raynor Winn and PSPA as Raynor completed the final miles of her and Moth's Thames Path from Putney to Westminister. It was a lovely few hours in the sunshine, albeit quite emotional as we walked past Mum's flat on the north side of the river.
On race day the adrenaline really kicked in. And just like that, bang on my allotted start time, I was walking to the official race start. The atmosphere at Tower Bridge was incredible. I’d already seen (and heard) a couple of friends shouting my name which was a super boost. Then I spotted my daughter Olivia, at the PSPA charity cheer point, so another boost to go into the hardest part of the race.
I next saw my family and friends at mile 24.5, the second PSPA cheer point. Seeing them helped me to dig deep. My final time was 20 minutes faster than I ever thought was possible. I clocked in at 4.11.38. My legs completely stopped moving and I froze in complete shock.
The London Marathon was an incredible event to be part of. I’d like to thank everyone for being part of my marathon journey to raise awareness of two horrible illnesses that have touched us and many others. I have absolutely no intention of running another marathon. But I hope I can continue to help the PSPA.
The care and support we are able to offer people affected by PSP & CBD is thanks to the amazing efforts of our supporters, people like Anna who take on the challenges to help others.
If you would like to take on a fundraising challenge please contact fundraising@pspassociation.org.uk
ANNA RAINBOW COMPLETING THE LONDON MARATHON
WHAT GOOGLE WON’T TELL YOU ABOUT PSP
BY NADIA MENDOZA
Nothing
can prepare you for a loved one getting sick. When medical experts don’t understand, you must become the expert.
My fiercely independent mum – lover of books, cooking, travel, neat Scotch (no ice), and her beloved Sheffield United – was diagnosed with Progressive Supranuclear Palsy. Suddenly words like ‘brain disease’, ‘neurodegenerative’, and ‘prognosis’ were part of our vocabulary as we learned about this weirdsounding illness.
The roles reversed, me becoming the parent and Mum becoming the child. I hope by sharing information from our journey, it can provide the teeniest light.
To keep Mum mobile, the first service we accessed was AGE UK for seated exercise classes to help coordination, movement and social activity. We sorted Power of Attorney swiftly so I could communicate on her behalf. I applied for benefits and Mum was awarded Attendance Allowance and Pension Credit.
Mum moved downstairs, the living room now her bedroom. We had grab rails fitted by the bed and toilet to support her, as well as a rotunda which helped standing from a seated position, all organised by the
Occupational Therapist (OT) via GP referral. The OT also arranged a walking frame; a wheeled commode which could be used in different rooms; and an overchair table that was brilliant during mealtimes.
As the illness progressed, the OT authorised a gantry hoist, a profiling bed with electronic adjustments and slide sheets for repositioning. But what we needed most was a live-in carer. I sought funding from the council through a social worker in the Adult Social Care department. After a needs assessment, they granted Direct Payments for privately funded care, which provided a double-up to visit four times daily to help the live-in.
I requested a Council Tax disability reduction, and had a ramp built for wheelchair access thanks to the Disabled Facilities Grant also via the council. The GP referred us to LOROS hospice, where Mum joined their Compassionate Neighbours programme and received visits from an exceptional volunteer.
NADIA'S FAMILY WITH HER MUM
We used local Facebook groups to find befrienders, ensuring Mum had diversity of guests, and found a wonderful medical student who visited weekly. Additionally, we discovered ‘Soul Midwives’, sometimes known as ‘Death Doulas’, who provide companionship at end of life. We recruited two, gently explaining their role to Mum as ‘befrienders who help people like you to make things feel less scary’. We joked Mum had a better social life than us, with all her visitors.
The GP also referred to:
• Community Integrated Neurological Stroke Service (CINSS) who provided SmartSeatPro armchair for weakening posture
• Electronic Assistive Technology Service (EATS) who supplied environmental controls, including device to turn lamp on/off from bed
• Speech and Language Therapy (SLT) who monitored Mum’s swallow throughout the illness
• Dietician who prescribed high-calorie drinks to maintain weight
• Continence Service who provided pads on prescription
• Wheelchair Service.
The SLT team were particularly helpful with sensory modification advice, which involves alternating between sweet and savoury or hot and cold to trigger a swallow, and also suggested buying a Kapi Cup to aid drinking without Mum needing to tilt her head.
I contacted NHS Community Dental Services for home visits. They prescribed a high fluoride toothpaste and advised using an electric toothbrush. Along the journey, I made laminated posters, stating ‘Please have patience to allow me to communicate’, for the revolving door of district nurses. I bought stylish neckerchiefs on Etsy to complement Mum’s outfits, instead of adult bibs. To alleviate light sensitivity, I invested in wraparound sunglasses. And I discovered lollipops are a simple yet effective remedy for excess saliva, before Mum transitioned onto an over-thecounter and then prescribed travel sickness pill.
We turned to PSPA Facebook groups for support, forever amazed by the wealth of knowledge, more insightful than doctors. I recognised when Mum refused to eat or became confused, it was often linked to a UTI. We found a hairdresser for home visits who pampered Mum until the end. We took Mum to my sister’s choir concerts in wheelchair-friendly taxis, even in the late stages, where she’d listen with her eyes closed.
I recommend removing rings at first signs of hand rigidity or deformity. We waited too long and had to cut Mum’s wedding and engagement ring off. Fortunately, a jeweller repaired them and they later hung on a chain by Mum’s bed. We encouraged friends to send videos on Mum’s birthday, decorated her room with fairy lights and a photo blanket, and I made us matching friendship bracelets.
But my best advice?
Say what you need to now. Seek forgiveness if needed. Because whenever you think ‘The End’ might come, endings often surprise. I expected the end would be when Mum refused food. I imagined her being kept comfortable with sedation for a few weeks until her final breath, surrounded by loved ones.
It’s not what happened. Mum continued eating (albeit teeny amounts via syringe), then one morning, she didn’t wake up. It shook me to my core. I regret not cherishing each goodbye as potentially the final one. I grew accustomed to her enduring illness, assuming she would keep going indefinitely. With Mum gone, there is comfort in knowing she’s no longer suffering. Some might say death is ‘losing the battle’. I say she won. PSP can’t get her now.
Nadia’s honest account captures some of the many challenges people can face when supporting a loved one who has been diagnosed with a life changing illness like PSP or CBD. There’s such a wealth of valuable support and information that comes from those with lived experience and so much others can learn from these insights.
At Compassion in Dying we support people like Nadia and her mum everyday - people who are fiercely independent and want to know more about their options to plan ahead and make sure their wishes are known, and can be followed when they become very unwell and can no longer communicate this for themselves.
If you’d like to know more about the different ways you can prepare for the end of life you can call our free nurse led information line on 0800 999 2434 or visit our website compassionindying.co.uk to find out more.
Sarah Malik
Clinical Lead and Services Manager, Registered Nurse, Compassion in Dying
A DAY IN THE LIFE OF A PSPA HELPLINE MANAGER
Julia Brown is PSPA’s Helpline Manager and works alongside a team of Helpline Care Navigators and Helpline volunteers. Julia takes us through a typical day.
9AM
As soon as I log onto the phone system a call comes through. There are days when it is one call after another and it can be three hours before I’m able to step away from my desk.
Today the caller is a carer to her friend and is starting to struggle. Her friend has become increasingly reliant on her and she doesn’t know what to do. I listen. It’s important we give people time to get everything off their chest. We don’t have any time restrictions on calls. I give some suggestions, including getting some paid carers in to help in the mornings and evenings. I share with her how it works and who to contact. I also explain the funding options, including the threshold for social services support.
11AM
With carers the biggest thing we get called about is carer stress. That stress is so often compounded by not knowing what support is out there, or how to get it. I answer the phone to a lovely man whose wife has PSP. His wife was admitted to hospital last month. She
has further deteriorated and is no longer mobile. He’s also seen a rapid deterioration in her cognition. The hospital want to discharge her to a care home 15 miles away. I really feel for him. He is entirely overwhelmed and doesn’t want his wife to be placed in a care home he can’t get to.
We do get a number of calls from people in crisis. People often don’t want to look too far ahead. We recommend trying to anticipate needs as much as possible, but I know this isn’t always possible. He tells me his daughter is going to support them in finding a care home, he asks if I can chat to her as she is visiting them today.
12 PM
I chat with the man’s daughter about selecting a care home. While we’re on the phone we look at some care homes in their area and I explain the CQC rating. We can’t recommend specific care homes. She is going to make some calls. I give her some suggestions on questions to ask care homes.
JULIA BROWN
"WE SAY TO EVERYONE THAT TO ASK FOR HELP IS A SIGN OF STRENGTH. EVERYONE NEEDS HELP, ESPECIALLY IF YOU ARE LIVING WITH PSP OR CBD."
1.30PM
I speak to a lady whose dad has recently been diagnosed with PSP. She has read the information on the website but is finding it hard to adjust to the news. We often get calls from family members of those newly diagnosed. While the information is online, having a conversation enables us to dispel any myths and cut through the jargon.
Her dad was a very active man and only retired last year at 63. He was looking forward to travelling and spending time with his grandchildren. The daughter tells me that while his balance isn’t great and he has become quite apathetic, he is otherwise okay. I try to reassure her that people can live as well as possible with PSP. I give them details of a PSPA Support Group in their area so she and her dad can meet other families affected by the condition. I also email her our information leaflets that will be helpful for them to work through.
2.30PM
A man who is living with CBD wants to apply for Personal Independence Payment (PIP) benefit. We get a lot of calls about benefits. It can feel like such a minefield and people don’t know where to begin. He feels overwhelmed by the form as it is over 30 pages long. We talk through the form, how to answer the questions and I suggest I refer him to the Department of Work & Pensions home visiting service, who can support with completing the form. I make a note to call him back in a few weeks to check on progress of his application.
3PM
I get a call from a Speech and Language Therapist who wants to arrange some training on PSP & CBD. The Helpline runs training sessions for all healthcare professionals. I talk to my colleague Debra, who is going to get it booked in and run the course.
3.30PM
A lady calls who is in her early 80s. She is a carer for her husband who has PSP. She sounds so tired. I don’t know how she has managed for so long with no support. The couple don’t have any children and
have been struggling for a number of years. She says she sleeps with one eye open in case her husband attempts to get out of the bed.
When you are a carer and worn out, to talk about how you are struggling can be really hard. Many people feel it is wrong to say they are not coping. It’s a barrier we are always trying to overcome. We say to everyone that to ask for help is a sign of strength. Everyone needs help, especially if you are living with PSP or CBD.
I suggest to the caller that I can refer her for a carers assessment. She’s worried they will say he has to go into a care home, which neither of them want. I reassure her that no one will do anything she does not want, and that by having a care package in place it should make life a little easier to manage. As soon as the call ends I make the referral.
Care packages can make such a difference but social services are struggling. There is also a lack of paid carers which is putting further pressure on the system. On the Helpline we hear so many stories of people who are struggling to get reliable paid carers. People don’t want to see different, unfamiliar faces in their homes every day.
I ask the caller if I can refer her to our Link Volunteer Service. I explain to her how it works and that a Link Volunteer will call or visit her, providing her with a space to offload. She thinks it could help her and agrees for me to make a referral.
The caller is very good on the computer so I tell her about the online carers groups that are a brilliant source of information and support, including our online pamper sessions we run for carers, to help them take some time out to look after themselves.
4.15PM
The daughter I spoke to earlier calls me back. They’ve managed to secure a care home in their town. I’m so relieved for them. I ask the daughter if she would like us to do an education session on PSP with the care home staff. This is something our incredible Educational Volunteers do. She would like me to get something organised.
4.45PM
I take a call from someone who wanted to say thank you for the support they’ve received. This is a lovely way to end the day. We are just pleased we can be here for people.
GET SUPPORT
Our Helpline is open Monday through Friday from 9am to 9pm on 0300 0110 122 or email helpline@pspassociation.org.uk
I’m caring for someone living with PSP or CBD
CREATING A BETTER FUTURE FOR EVERYONE AFFECTED BY PSP & CBD.
PSPA offers a wide range of information and support for everyone affected by PSP & CBD. These aim to help people come to terms with a diagnosis, understand their condition and how it may progress, as well as connect them to other families.
View the diagram to the right to see all the information and support available to you and your family.
Access all support and information by getting in touch with our Helpline on 0300 0110 122 or by emailing helpline@pspassociation.org.uk.
I’m a carer or a person living with PSP or CBD
For more information visit www.pspassociation.org.uk
MALE CARERS SUPPORT GROUP
ONLINE PAMPER SESSIONS
GROUPS
COUNSELLING SUPPORT SERVICES
ONLINE EXERCISE CLASSES
NEWLY DIAGNOSED GROUP
GROUPS
I’m living with PSP or CBD
PSPA MATTERS MAGAZINE
EDUCATIONAL SESSIONS FOR PROFESSIONALS
ONLINE FORUM
OPPORTUNITIES TO GET INVOLVED IN RESEARCH
"I FEEL THE NHS HAS OUR BACK"
Julia Tickridge describes applying for Continuing Healthcare Funding (CHC) on behalf of her husband Laurie as one of the hardest things she has ever done. It was also heart-warming and acknowledged her role as carer.
In her own words Julia talks about going through the CHC process and what she did to be able to present the strongest possible case to the CHC assessor.
“Laurie was diagnosed with PSP in 2018. Like many the path to diagnosis was lengthy, and further complicated by issues relating to a major spinal surgery operation on his neck in 2014 and a meningioma (benign brain tumour) which required gamma knife radiation treatment.
“Since then, I’ve been Laurie’s main carer, but by September 2021, it was becoming too much.
I knew I needed more support. To get on the radar of all support services I arranged for a carer’s assessment, and I also asked for mental health support from the GP.
“After the carer’s assessment I received a small allocation of respite, to give me a few hours of help. We got a personal assistant (PA) who’d sit with Laurie while I could focus on other things. This was a huge help and alongside the support from our local hospice, we were able to manage quite well for a while, until Laurie’s needs further increased.
JULIA AND LAURIE
“Adding pressure to my caring duties was the fact that we didn’t have anyone locally to coordinate Laurie’s care. I was doing that role and ensuring all care professionals were informed and joined up. When I shared this with the hospice, they said I could ask for a complex case manager at the GPs.
“At the meeting with the complex case manager in December 2023 we went through the CHC checklist. I knew about CHC packages, but I’d just assumed we wouldn’t be eligible and that it was too early for CHC funding. But when I worked through PSPA’s CHC document that lists the 12 domains, I saw that Laurie was potentially eligible. The CHC checklist appointment took two hours. I had to be very clear about PSP symptoms and the way it affects a person may not always be obvious. I knew I had to really advocate for Laurie.
“We were told a CHC assessor would come to our home for a meeting. I sprang into action to be as prepared as possible. I spoke to the Palliative Care Consultant about what I should do to get ready for the meeting. They suggested having someone there to support me. I contacted PSPA’s Helpline to see if Helpline Manager Julia Brown, would be happy to attend via Zoom. It was a huge relief when she said yes. I knew with Julia I’d have an advocate in the room. I also asked other members of Laurie’s healthcare team to attend.
“Laurie’s Speech and Language Therapist, Physiotherapist, Orthoptist, PA and Julia from PSPA were there for the meeting, some in person and some via Zoom. I’d prepared myself for a challenging meeting and I knew we had to prove that Laurie’s needs were healthcare non-means tested rather than social care that is mean tested.
“It’s so important to keep a record and have written evidence. I’d asked the Neurologist at The National Hospital for Neurology and Neurosurgery at Queen's Square in London for a letter of support. They wrote a really comprehensive letter detailing Laurie’s health needs and how it impacts him. Alongside this I had letters from the Speech and Language Therapist, Neuro Physio team, Consultant Nurse from the cognitive disorders clinic at Queen’s Square in London, Palliative Care Consultant and hospice social worker. I’d also kept a diary for the last nine months where I’d documented everything I could about his daily life along with how I managed risks including choking and falling.
“I was only given 10 day’s notice of the meeting taking place. So it was a bit of a scramble to get everything ready to make sure we had presented his needs as fully and comprehensively as we could. The Nurse Consultant advised me to ensure I cover all my interventions as a carer too.
“The meeting itself was actually a really positive experience. It was touching to see everyone there for Laurie. The assessor told us that she was going to recommend Laurie for a CHC funded care package. Two days later we received a letter confirming Laurie’s CHC funding and that a care plan would be written. They also sent the report that was incredibly comprehensive. As part of Laurie’s care package I’m entitled to four weeks of respite care. This brought tears to my eyes as I never had a break, and to hear acknowledgement of my role as a carer was very touching.
“I’d recommend to anyone to prepare as much as possible. And gather your team together to speak on your behalf. It’s worth bearing in mind that while all the people involved in Laurie’s case were brilliant, the system is very slow and it took three months before we received any funding.
“It’s also worth remembering that ‘continuing’ is the key word. You have to continue to show the healthcare need and the funding is assessed initially after the first three months and then annually. To support this I still keep a diary and I complete risk assessments to show what I need to do to keep Laurie safe.
“We wanted to be together at home for as long as possible. Laurie’s funding enables us to do this. There are days when I feel like I’m running a care home with a VIP patient, but overall I feel like the NHS has our back.”
JULIA’S TOP TIPS
• Keep a diary including anything you do to manage risks like falls and choking
• Ask your Neurologist and other healthcare professionals for letters detailing PSP and how it affects daily life
• Make sure you are in contact with your local hospice, they provide amazing support to both the patient and the carer
• Download PSPA's CHC information sheet and checklist at www.pspassociation.org. uk/information-and-support/just-beendiagnosed/pspa-publications/
• Make sure you have support during the meeting. Ask your healthcare team to be there
• PSPA’s Helpline team may be able to come along to CHC assessor meetings to support your application
• Remember that you will have to continually show the need for the CHC funding.
HEALTHCARE RESEARCH PLAYS AN IMPORTANT ROLE FOR PEOPLE LIVING WITH PSP & CBD
Dr Boyd Ghosh is a Consultant Neurologist in Southampton and Salisbury. Dr Ghosh set up the region’s first dedicated clinic for patients with PSP & CBD in 2015, and now runs the Wessex Ataxia and Atypical Parkinsonian Syndrome Service in Southampton, with Clinical Coordinator Jade Donnelly and Neurologist Dr Massey.
Alongside providing coordinated care for patients, the centre is carrying out healthcare research to enable people with PSP & CBD to live the best possible quality of life. Here, Boyd shares some of the research conducted in the clinic and how it will benefit people living with both conditions.
“For far too long neurology patients would be diagnosed with these devastating conditions and sent home with little to no follow-up. Sadly, we don’t have a cure, but it’s important we share with patients how care can help them.
“When I set-up the clinic back in 2015, I wanted to provide a service that would take a proactive approach in managing symptoms. That means avoiding unplanned hospital admissions and ensuring the patient is linked in with all the professionals they need to live as well as possible.
“We have very close links with PSPA and refer all newly diagnosed people to the charity to access its support
Support Groups and other sources of help. We also have a PSPA Helpline Care Navigator who attends clinics. It’s immensely helpful to be able to signpost people to PSPA and for them to know that practical and emotional support is available to them.
“There’s a lack of knowledge about PSP & CBD, and this extends to healthcare professionals. I know this is a common frustration among people living with PSP & CBD. Funded by a PSPA Awareness Grant, we run a monthly networking meeting where our local healthcare professionals can join the call and ask questions. So, if they find they’re suddenly supporting someone with either condition, they have access to a network where they can get information and advice.
“At the centre we are involved in a combination of drug studies and grant-based research looking for causes of the disease. We are taking part in the PROSPECT and ExPRESS studies, along with several commercial studies. Naturally, a lot of focus is on biomedical
JADE DONNELLY, LUKE MASSEY AND BOYD GHOSH
research and the promise it holds in improving our understanding of the conditions and how to treat them. But healthcare research plays an important role for people living with the condition now. It seeks to find answers about the best options to improve healthcare for patients today and it’s how we can find new and better ways to manage and treat conditions.
“Every week I diagnose someone with PSP & CBD. It’s devastating news for them to hear. It’s also difficult for their family. As PSP & CBD progress it typically means they become more dependent on their carers. We recently had a student who did a project on impulsivity and apathy in a small number of patients with PSP, CBD and Multiple System Atrophy (MSA). Our study showed that behavioural changes have a bigger impact on carer burden than direct consequences of physical impairment, or difficulty in performing activities of daily living.
“Over the last three years we’ve run several healthcare studies. One of our recent studies investigated the physical decline and impact on activities of daily life of prolonged bedrest for PSP patients. Previous studies have shown that induced bedrest in healthy young males for five weeks leads to a decline in physical capabilities. We investigated what would happen if a patient with PSP or CBD was hospitalised and experienced prolonged bedrest and compared them to patients who weren’t admitted to the hospital.
“Our study showed an increase in dependence on carers for basic activities for the hospitalised patients and a greater rate of decline in their walking. The study also showed that without consistent engagement in physiotherapy or carer-aided exercises, physical abilities were lost. This highlights the importance of trying to avoid hospital admission or maintaining activity if people are admitted.
“It is difficult to know how many people are admitted with PSP & CBD. When patients are admitted to hospital their diagnosis and the reason for their admission is “coded” by the hospital and registered with the NHS. These figures are then available to people who arrange or pay for hospital services to ensure that they are providing the most efficient service. However, a previous study we organised showed that until recently PSP & CBD were not easy for hospitals to code and therefore sometimes, they were incorrectly recorded. In some cases, people living with PSP were incorrectly coded as having Motor Neuron Disease (MND).
“Unfortunately, what this meant in practice was that the diagnoses of PSP & CBD were largely invisible to the NHS and resources for care and to some extent
research was much harder to argue for. This situation has improved with more up to date classification systems for diseases but there are still errors. These can occur, for example, if patients with these rare diseases are noted down in hospital notes as having Parkinson’s disease rather than their actual, rarer, disease.
“Our aim in our clinic is to provide the best support we can and to provide patients and their families with the best possible quality of life. We aim to help them to stay as active as they can. However, we don’t know if what we do has any more effect than more standard, less specialist clinics.
“With a Research Grant from PSPA we are about to conduct a study to compare the care people receive from a specialist service like ours, with the care people receive from a general neurology clinic. We’re interested in finding out if having access to a specialist service reduces unplanned emergency admissions, avoids complications further down the line, and ultimately, if it has an impact on length of survival through access to timely interventions.
“In August we will begin recruiting participants. If anyone is not under the care of a specialist clinic, and would like to be involved, please contact us. If we can prove the advantages of having access to specialist coordinated care, it would provide the evidence we need to influence NICE for national guidance on PSP & CBD, meaning all patients, wherever they live in the country, would be able to access this type of care. It will also provide a strong business case for the establishment of more specialist centres.
“Every day we are learning more about PSP & CBD. People living with both conditions are a key part of the reason why we can learn so much. Research simply couldn’t happen without them and that’s something we never lose sight of.”
INTERESTED IN TAKING PART?
If you live within 250 miles of Southampton and would be interested in being involved in the two-year study please contact QOLAPS@uhs.nhs.uk. You will be sent questionnaires at six monthly intervals and once a year you will be assessed in your home.
Alternatively scan this QR code and complete PSPA's Expression of interest in research form
"MORE THAN ANYTHING I WANTED TO HELP INSPIRE OTHERS TO GIVE ART THERAPY A TRY. IT’S HELPED ME SO MUCH.
WENDY WITH SOME OF HER PAINTINGS
WENDY’S ART EXHIBITION AT PSPA'S EVENT IN SCOTLAND
Wendy Blacklock was working as a secretary when she received her diagnosis of PSP at 62. As her symptoms progressed Wendy found it hard to adjust. She’d always been busy and active, whereas now she hardly left her home. A referral to a specialist palliative care centre gave Wendy the opportunity to pick up a paint brush during an art therapy session, giving Wendy a new passion to focus on.
Wendy said: “I’d never done art before. I was terrible at drawing when I was at school, so when my palliative care team first suggested I try a block of art therapy sessions my first instinct was to say no. But the art therapists were really inspiring and eased me into it.
“After the first session I was hooked. I absolutely loved it. I go every Thursday and for the last two years it’s been the highlight of my week! It’s helped my coordination and it gives me such a welcome break from thinking about PSP. I also paint at home. It’s given me a focus and I feel like I’ve captured something of my old busy life again.”
When Wendy shared with PSPA how much she had benefited from art therapy the team asked Wendy if she would be willing to share some of her art at the Family and Friends Day in Scotland. The event at The Barrack Conference Centre in Stirling, held in July was a big moment for the charity, having been over five years since PSPA had been able to hold an event in Scotland.
More than 40 people attended the event and heard talks from health and social care professionals involved in the care of people with PSP & CBD. Talks included an overview of physiotherapy and how it can support symptom management, and an overview of the support services PSPA offers.
Carol Amirghiasvand, Director of Service Improvement and Development said: “It was fantastic to see so many people on the day, a super chance to raise awareness of PSP & CBD and meet some of those we support in Scotland.”
During lunch people were able to see Wendy’s art and hear more about the benefits of art therapy. Wendy said: “I’d never shown my art before, so I was excited to share it at PSPA’s Family and Friends Day. A selection of my paintings were shown on the screen and I brought along some originals too.. More than anything I wanted to help inspire others to give art therapy a try. It’s helped me so much. I’m also selling my paintings to raise money for PSPA.”
After lunch we welcomed over 50 health and social care professionals to the Study Day session. Paula Hewart from the Atypical Parkinson’s Clinic in Ayr opened the session with a presentation on symptoms and management of PSP & CBD. Paula was followed by Helen Carten, Specialist Physiotherapist who presented three case studies and discussed ways in which physiotherapy can support patients as part of a multidisciplinary team approach. After the break Gillian Beaton, Speech and Language Lead in Glasgow gave an informative presentation on speech and swallow in PSP & CBD.
After the warm welcome we received in Scotland, PSPA is now looking to organise a similar event in Wales. Watch this space!
INTERESTED IN BEING INVOLVED?
Please contact Julia Brown
helpline@pspassociation.org.uk if you are a health or social care professional working in Wales and would be interested in being part of the presentation schedule.
"SETTING UP A SUPPORT GROUP HAS GIVEN ME A FOCUS"
As a retired GP, John Fearnside was well equipped to navigate the NHS on behalf of his wife Patricia, who was diagnosed with PSP.
However, they were not prepared for the lack of information and signposting which resulted in the couple only discovering PSPA two months before Patricia died.
In Patricia’s memory, John wanted to find a way to help people living with PSP & CBD, to ensure that they had access to the best information and support. He identified the need for a Support Group in South Yorkshire and held his first meeting in May 2024 with 14 people attending. A second meeting followed in June with 16 people.
John said: “In my 30+ year career as a GP, I’d never seen a patient diagnosed with PSP or CBD. I had to learn about the condition the hard way from the patient/carer’s position. I researched everything I could about it, but had no idea that PSPA existed until two months before my wife died.
“Patricia was a wonderful, kind and generous person who would help anyone. We had so many shared interests and did everything together. In December 2020, Patricia started to experience problems with her speech. I took her to see our regular GP who suggested a specialist referral and added it would be in the Medicine for the Elderly department. My wife had connotations of the old geriatric wards, and as her speech problems were intermittent, declined the referral.
“Three months later Patricia experienced a disabling attack of vertigo which required a home visit. The duty doctor who had never seen my wife sent a nurse who performed a basic assessment. Subsequently the same doctor referred Patricia for a CT scan and following the results a referral to a Neurologist. She was given a telephone appointment for late July 2021.
JOHN FEARNSIDE
“In the meantime, her speech deteriorated and her mobility was affected. I took her to see her regular GP who immediately recognised that her neurology appointment needed expediting and brought forward by a few weeks. I then gave the neurologist my wife’s medical history and he said he wanted to see her, ‘soon’, which meant within eight weeks. Her first outpatient appointment in October 2021 was cancelled and postponed to December 2021.
“By December Patricia’s mobility had deteriorated but she was still able to walk into the outpatient department. The Neurologist examined Patricia and immediately suspected PSP which was the first time it had been mentioned. He requested a MRI scan and also suggested a further appointment with a colleague who specialised in movement disorders.
“The MRI scan was performed in February 2022 and at that time it became apparent that Patricia needed to use a wheelchair when outdoors. She had also adopted a fixed flexed position of her left arm and had difficulty negotiating the smallest step. The specialist appointment eventually materialised in August 2022, by which time Patricia’s speech and mobility had significantly worsened. Again, the diagnosis of PSP was given including Corticobasal variant. A month’s trial of Madopar was prescribed which had no benefit and Patricia was reviewed at the end of the course. No further appointment was made, and it was left that I would contact the specialist directly should the need arise.
“A short time later we were given an appointment with the local Community Neuro Matron who visited us at home. She was the mainstay of Patricia’s support and quickly became my rock. Both she and later the Speech and Langauge Therapist were brilliant.
“I cared for Patricia at home and my medical background certainly helped. We adapted as time passed, I’d feed her, clothe her and we communicated by a thumbs up or down. She lost weight and I secured the help of a Dietitian who prescribed liquid food supplements. Patricia’s progression occurred in increments. It would plateau for some time before suddenly deteriorating again. Throughout it all, Patricia remained lucid and although emotionally labile retained her mischievous sense of humour and we’d always try to find something to smile about.
“Our daughter, Jan, visited regularly and when Patricia became too weak to stand, even with support, the Community Matron arranged for a care package and fully adjustable bed to be installed. Patricia had become extremely frail and was only able to take small quantities of liquid which I fed her with a syringe.
I was concerned about her oral hygiene and the Speech and Langauge Therapist recommended Biozoon and said PSPA might fund it. That was the first I’d heard about PSPA. I read about the charity and all the ways it can help families and wished I’d known about it sooner.
“By November 2023 it was obvious Patricia was close to the end and community care from the local hospice was arranged. A syringe driver was set up and on 1 December 2023, Patricia passed away peacefully with myself, Jan and my sister-in-law by her side.
“Despite all the appointments no one had ever mentioned PSPA. Now I’m adjusting to life on my own, setting up a Suppport Group has given me something to focus on. Also, I know Patricia would have wanted me to do this which keeps me going. I now have this knowledge and experience to use and help others. No two patients with PSP or CBD are the same and there are so many variations in how both conditions present and develop. My wife had a very rapid version of PSP with a Corticobasal variant and from onset of evident symptoms to her life’s end was just three years.
“There have now been two meetings of the new South Yorkshire Support Group. The first meeting held in May had 14 attendees from a wide area including Sheffield, Barnsley, Doncaster and Rotherham. The second meeting in June saw 16 people attend. We had five people affected by PSP and three affected by CBD and the meeting went very well.
“My daughter, Jan, came again to help with the arrangements and to take notes. They are all lovely people, and we had some very constructive, friendly and fruitful discussion with sharing of information and problems encountered. All in all, it has been the most encouraging experience, new friendships have been made with members supporting one another thanks to the services of PSPA. I feel the group has got off to a flying start and we are all looking forward to our next meeting.”
“IN MY 30+ YEAR CAREER AS A GP, I’D NEVER SEEN A PATIENT DIAGNOSED WITH PSP OR CBD. I HAD TO LEARN ABOUT THE CONDITION THE HARD WAY FROM THE PATIENT/CARER’S POSITION."
EXPANDING OUR SUPPORT GROUPS
SHROPSHIRE SUPPORT GROUP RELAUNCHED
A support group for people living with PSP & CBD has relaunched in Shropshire. Peter Grindley who cared for his wife Janet, decided to set up a group following her death.
“EARLIER THIS YEAR, I CONTACTED PSPA TO ESTABLISH IF THERE WAS INTEREST IN RESTARTING THE SHROPSHIRE GROUP AND, IF SO, I WOULD BE HAPPY TO COORDINATE."
Peter and Janet regularly attended Support Group meetings together in 2018 and 2019. Following Janet’s death, Peter wanted to use his experience to help support people in his area and relaunch the group.
Peter said: “The PSPA Shropshire Support Group was run very successfully by Dianne Davies until Covid intervened. Sadly the group never got going again. The meetings were well attended and, I felt, extremely beneficial with a great deal of useful information being exchanged between families. Importantly people made new friends facing similar difficulties and learnt how to overcome challenges and what local services were available.
“Earlier this year, I contacted PSPA to establish if there was interest in restarting the Shropshire Group and, if so, I would be happy to coordinate. That agreed, I contacted the Severn Hospice about availability of a suitable room.
“Currently, with PSPA’s help, I am promoting the relaunch of the group to people living with PSP & CBD within a 40 miles radius of Shrewsbury. The first meeting of the relaunched group was in July.
“Initially, I will focus group meetings as being a place to meet others facing similar challenges, an opportunity to make new friends and have a good chat over a hot drink and a piece of cake. As meetings progress, I will look to invite guest speakers and establish discussion topics.”
SUPPORT GROUPS
Support Groups provide a welcoming and friendly place for people affected by PSP & CBD, including family and friends, to meet up on a regular basis to share experiences, information and just chat. Visit www.pspassociation.org.uk/informationand-support/your-pspa-support-networks/ your-local-group/ to find your nearest group.
PETER GRINDLEY
NEW GROUP IN THE SOUTHWEST
Florence Bate has set up a new support group for people affected by PSP & CBD in Devon and Cornwall. Florence set up the group following her dad, Richard’s diagnosis of PSP.
Explaining why she wanted to set up the group Florence said: “PSPA is a lifeline for many, and following Dad’s diagnosis of PSP earlier this year, it felt important to create a community in the Southwest, where people can come together and feel supported.
"The first online meeting was incredibly well-received and we’re now arranging in-person meetings alternating between Devon and Cornwall.
“Our first in-person meeting was held in Okehampton. Eight of us came together to share stories, offer advice and enjoyed homemade cake! Our next in-person meeting will be near Newquay and we hope to see some new faces there too.
To support their challenge visit www.justgiving.com/page/ fivepeepstakeonthreepeaks
“By giving people affected a space to share knowledge and information, I really hope that living with and caring for people with illnesses such as PSP & CBD doesn’t feel so lonely.”
Florence’s determination to help others affected by PSP & CBD is also seeing her, along with her brother Louis and their partners and friend, take on the Three Peaks Challenge to raise funds for PSPA. The group has so far raised an incredible £8,600, or, as Florence says, ‘the equivalent of 100 days of laboratory research funded’.
FIND A SUPPORT GROUP IN YOUR AREA Visit www.pspassociation.org.uk/informationand-support/your-pspa-support-networks/ your-local-group/ to find a group nearest to you.
FLORENCE WITH HER DAD, RICHARD
NEW LINK VOLUNTEER SERVICE
Our new ‘Link Volunteer Service’ provides short-term support to people affected by PSP & CBD to improve their wellbeing and help them through difficult times. Since the service launched, we have recruited and trained 22 Link Volunteers. We chatted to three Link Volunteers and asked them to share their motivations for taking on the role.
“I miss Grandad but volunteering is my way of continuing his legacy.”
Maddie Fitzpatrick’s grandad Leo had PSP, but the condition was only confirmed following his passing. Maddie and her family received very limited support during her grandad’s eight years living with PSP and often felt isolated as a result.
Maddie said: “The confirmed PSP diagnosis only came following my grandad’s brain donation. It was hard to see Grandad’s progression with the disease. the biggest difficulty was for family, friends, and even healthcare professionals to understand how it affected him and how to approach his needs. We were basically left as a family to figure it out on our own. Back then we didn’t know about PSPA - I wish we had! He would have loved the support and community involved.
“I work as a Physician Associate at a GP surgery, so my job is all about helping people, communicating, observing people’s needs and solving problems. I spoke to Carol and Lavonne at PSPA who discussed all the ways I could volunteer. When I heard about the Link Volunteer role I knew that was a perfect fit.
“I completed my training in May and was then matched with a person living with PSP. I visit them every week. They can often feel quite isolated so it’s nice to be able to give them some company. They struggle to communicate so I’ve been also helping the care home to understand more about PSP.
“I’ve arranged for a Physiotherapist and an Occupational Therapist to visit, to see what equipment and adaptations can be made to their room. It’s so important that people with PSP or CBD get expert advice, because things can be done to help live well with it.
“When I first started volunteering my focus was on how I could help others. But what I actually realised is how much of a sense of fulfilment you get yourself as well as making new friends. It’s such a lovely feeling to help someone, and it feels great to see the difference you can make to their day-to-day life in many ways.
“My Grandad always helped others and he was generous to a fault. His final act of generosity was to bravely donate his brain and spinal tissue to the Brain Tissue Resource Centre, to help people in the future. I’d like to carry on his passion for helping. I miss him so much but volunteering for PSPA is my way of continuing his legacy.”
MADDIE AND HER GRANDAD
“It feels worthwhile to help someone with PSP” Wendy Form always thought that she would volunteer for PSPA. She first used the charity’s support services when her dad was diagnosed in 2010. At that time Wendy was working full time with a family to look after, alongside supporting her parents . Now retired, Wendy was keen to support the charity that was such a big help to her family.
Wendy said: “PSPA helped me a lot. When Dad was unwell no one had heard of the disease. It was very isolating for us all. During the most challenging time in my family’s life, PSPA’s Helpline was there for us.
“I knew I’d volunteer for PSPA when the time was right. The email from PSPA recruiting new Link Volunteers came at the perfect time, as I’d recently taken early retirement. When I called Lavonne for a chat that cemented for me that I wanted to get involved.
“Although everyone’s experience of PSP is different, I do have an understanding of PSP, especially the impact on the rest of the family. I empathise with the feeling of loneliness and loss because it brings enforced change. I understand how it puts pressure on family dynamics.
“I was matched with a carer for a loved one who has PSP and I provide telephone support. I really identify with a lot of things that she shares with me. I think it helps to offload to someone who understands.
“I’m really glad I responded to the email from PSPA about the role. It feels worthwhile to be able to help someone who is dealing with a PSP diagnosis. Dad’s diagnosis was such a difficult time for my family, so it feels appropriate to do something positive in his memory to try and help others.”
“It’s a nice way to honour Theresa’s memory”
Jon Battershill first connected with PSPA back in 2014, following Jon’s wife Theresa’s diagnosis of PSP. Remembering the isolation they felt during Theresa’s five years living with the condition, when Jon saw an
advert for Link Volunteers, he decided to apply.
Jon said: “We were already two years into the condition before we knew what it was. I’ll never forget when the diagnosis was finally made, Theresa said, ‘at least I have a name for it now’. By that time she was in a wheelchair and already had six emergency hospital admissions under her belt.
“One of the things that would have helped us would have been the chance to chat to someone who had personal experience of the condition. We went through most of the illness not meeting anyone with PSP. The healthcare professionals, including the GP and neuro rehabilitation team, had never come across PSP, so there was a real scarcity of knowledge.
“We spent so long trying to fish around for information. At times we felt we were in freefall. The one thing I clearly remember was the isolation we felt. As a Link Volunteer I hope I can alleviate some of this isolation for others living with PSP or CBD.
“It’s quite a responsible role and one that I feel we have been well prepared for. The training was good and I like the process behind it. You can see that this new service has really been thought through.
“I’m waiting to be matched with someone. I learnt a lot through caring for Theresa until she died from PSP. Myself and my sons David and Steve have done a number of things for PSPA since then. It’s a nice way to honour her memory and I think she’d be pleased that we’re doing that by helping others.”
To receive support from a Link Volunteer contact the PSPA Helpline on 0300 0110 122 or email helpline@pspassociation.org.uk
If you are interested in finding out more about this role please contact volunteering@ pspassociation.org.uk or call 01327 356137.
JON WITH HIS WIFE
WENDY FORM
NEW EXERCISE CLASSES FOR PEOPLE WITH PSP & CBD
People living with PSP & CBD can now access specialist exercise classes delivered by Neuro Heroes. We spoke to Laura Douglas, Physiotherapist and co-founder of Neuro Heroes. Here Laura explains why exercise is so important for people with conditions like PSP & CBD.
“We always say exercise is medicine for people with neurological conditions. We know exercise helps with mobility, balance, strength and fitness. For people living with PSP & CBD, it provides a very practical way people can take action to retain their physical function.
“Exercising can mean the difference between struggling to leave home or being able to continue to visit your grandchildren at your daughter’s house. And it could mean that you can continue to live as independently as possible.
“As a Physiotherapist supporting people with neurological conditions, I know we can make a big difference to people’s daily lives. As well as supporting physical health, exercise can also have a protective impact on the brain. Many studies have indicated that the parts of the brain that control thinking and memory are larger in volume in people who exercise than in people who don’t, and studies in Parkinson’s patients have shown that higher intensity exercise slowed the progression of the disease.
“In May we launched a new programme with PSPA to offer online classes to small groups of people with
PSP & CBD. All instructors are Neuro Physiotherapists with knowledge of PSP & CBD. Because the groups are small, instructors are able to give direct feedback and advice to people.
“The classes have been designed to provide maximum benefit to people living with PSP & CBD in their day-today movement. We focus on different daily tasks such as getting dressed, getting out of the car and moving from a sitting to standing position. With every task we look at the movements needed to perform that activity and will do exercises that will support it. This enables people to maintain function even as their disease progresses.
“We know people with PSP find leaning forward difficult. So during the classes we advise on ways to move forward with confidence, and we practice repetitively so people get more efficient and happier with those movements. Through the sessions we provide a lot of tools and tips of small changes that can make a big difference in movements.
LAURA DOUGLAS
“People do an eight week block, with a one hour session every week. During this time the physiotherapist will get to know their challenges and how they are moving. Every session is different and we like to keep people challenged in different ways, working on strength, fitness, coordination and balance in the chair or in standing for those who can.
“These sessions are about removing as many barriers as possible to exercise. People don’t need to travel,
they can do it from the comfort of their own chair, and they are secure in that the course has been designed around them, their condition and their needs. They also know there is an expert guiding them and giving advice. We make sure the exercises are manageable, while at the same time ensuring that they do push people in order to build up fitness and strength.”
“Joining PSPA's Exercise Sessions has been good fun and has given me a new range of exercises to do.
Previously I’d been part of a Parkinson’s exercise class, but much of what they did was not appropriate for me. The Neuro Heroes exercises are much more tailored to my condition. The feedback was also helpful as the instructor could see what we were doing and help us individually with the things we were finding difficult.
“Hugh, my husband made notes during the class and we now repeat what we do in class most days which has been helpful in improving the range of things I can do. We even took our tablet on holiday so we could join the class from Wales!”
Our Online exercise sessions are free for anyone who joins PSPA. If you are interested in joining an exercise class please visit www.pspassociation.org.uk/pspa-online-exercise-sessions
THANK YOU TO OUR HELPLINE VOLUNTEERS
To Celebrate 10 years of our Evening Helpline we held an online event to thank volunteers for everything they do.
Some of the volunteers at the event have been volunteering for PSPA since the Helpline was established ten years ago, like Caroline Jeffries Shaw, a Speech and Language Therapist.
Caroline Jeffries-Shaw said: “As a Speech and Language Therapist I felt I had something to offer. I’m also a good listener and very used to signposting
people to sources of support. The flexibility has been a big factor in enabling me to continue my volunteering alongside my busy day job. I’ve seen the charity grow in the last 10 years, but it has managed to retain its personal touch. All my interactions with PSPA make me feel so very valued as a volunteer. Volunteering for PSPA has enriched my life.”
Kathryn Timmons was at the event and is also one of charity’s first Helpline volunteers. Kathryn started volunteering after her husband George’s death from PSP. Kathryn said: “The Helpline appealed to me because I could volunteer from home, and the commitment didn’t feel like a burden. There are some people who simply wish to talk, while others want practical help. I know George would be pleased that I’m doing this. Volunteering is a big part of my life. I like to get to the end of the day and feel like I’ve been useful.”
KATHRYN AND GEORGE
CAROLINE (KNOWN AS CJ)
BETH SHEPHEARD-WALWYN, LIVING WITH CBD
PROVIDING A LIFELINE OF SUPPORT THIS CHRISTMAS
Christmas can be a wonderful time for celebrating, spending time with family and enjoying festivities. It can also be a really difficult time, if you are coming to terms with a PSP or CBD diagnosis, experiencing challenges progressing that symptoms can bring or you are facing this special time without a family member or friend.
During difficult times, confusion or loneliness, the PSPA Helpline is a constant source of information, support and signposting.
This Christmas, you can help support this lifeline service with a donation in the name of a loved one.
Kathleen Chappell has been the main carer for her brother Stephen since his CBD diagnosis. Kathleen often turns to the Helpline for information and support during this difficult time for the family. Talking about the support the Helpline has provided Kathleen and her family, Julia Brown, PSPA Helpline Manager said:
“I regularly give Kathleen time and space for her to voice her thoughts and concerns around care and support for her brother. I signposted her to PSPA’s Support Grants to help fund a battery pack for her Stephen’s wheelchair, and as his symptoms progressed and he moved into a care home, I provided training for the staff so they can tailor their care to his needs better.”
This support has been invaluable, as Kathleen explains:
“PSPA’s Helpline has become a real lifeline to us since Stephen received his diagnosis. “Having someone to turn to for information and guidance, who really understands CBD, the symptoms and progression is invaluable.”
Read more about how the Helpline has helped Kathleen and her family in the enclosed letter.
DONATE TO PSPA’S BAUBLE APPEAL
You can help support PSPA’s Helpline, today and in the future, by donating to our 2024 Bauble Appeal. You can donate online, by telephone or by post, in dedication to a family member or friend. All dedications will be shared on a bauble on our digital or head office Christmas trees.
DONATE AT:
• Website: www.pspassociation.org.uk/christmas
• Return the enclosed form to: FREEPOST PSPA
• Telephone: 01327 322414
THANKS TO YOUR SUPPORT LAST YEAR …
10,334
The PSPA Helpline responded to 10,334 telephone calls and emails requesting support.
848
Provided training for 848 health and social care professionals across the UK.
KATHLEEN WITH HER BROTHER STEVEN
30 PEAKS FOR PETER
Peter Grindley, 81, from Shrewsbury, hiked up 30 peaks in April to help raise awareness of PSP, a condition his wife lived with for four years until 2021.
Peter chose to take on the 30 peaks challenge, which began on 1 April at The Wrekin and ended on 30 April at Grinshill Hill, both Shropshire landmarks. He was wearing a purple PSPA hoodie throughout, to gain attention and get more people talking about the condition.
The challenge took on a 30 theme to help mark the 30th Anniversary of PSPA. Speaking about his challenge Peter said: “My daughter ran the London Marathon for PSPA in 2022 and 2023, and I felt it was now my turn to take on a tough challenge to help raise awareness and funds for the charity. It was intended to be difficult to, in some way, reflect the daily challenges faced by people living with PSP & CBD.
“I completed the challenge in memory of my late wife, Janet, who was diagnosed with PSP in January 2017. Janet led an active life, and it was most difficult seeing her become completely helpless because of PSP.
“During the first two weeks of the challenge, the weather was appalling, but it thankfully settled and allowed for some spectacular views from some of the country’s highest points. It proved a bit gruelling at times, but the cause behind it drove me on.
“I met some very nice folk on my travels, all showing interest in my challenge and why I wanted to do it. I left them with a PSPA leaflet and card so they can learn more about PSP and maybe tell others. I sincerely hope I have succeeded in bringing attention to a wider public the devastating impact cruel diseases PSP & CBD have on those affected.”
TAKE PART IN 30 FOR 30
Help mark our 30th Anniversary with a 30 themed challenge like Peter has. Visit www.pspassociation.org.uk/30-for-30/ for more information.
PETER ON HIS 30 PEAKS CHALLENGE
STARS IN THEIR EYES
Rob Preston and Woodhouses Cricket Club held a ‘Stars in their Eyes’ event in honour of Rob’s brother, raising £1,350.
KILTWALK
Claire Gill and Stevie’s Strollers took on the Glasgow Kiltwalk, in loving memory of Stephen McDonald, raising more than £3,700.
£3,700
TO ALL OUR SUPPORTERS
PROUD GRANDPARENTS
Janice and Sidney Turner are very proud of their two granddaughters Chloe and Lucy, who ran the Bristol 10km raising £630.
£1,350
£202,000
CAKE BAKE
Joanne Seal held a bake sale with her children over the bank holiday. Her local community came out in support and they raised £430.
£6,700
EPIC RIDE
Rob Warren andand his friend Grant took on the Cape Epic, a gruelling 8-day mountain bike race, through South Africa's Western Cape, raising more than £6,700 in memory of Rob’s dad Cliff Warren.
Every one of our 81 runners at the London Marathon had a personal reason for taking on the challenge. We are truly humbled by the effort these runners have put into their training, and fundraising. At time of writing, our marathon runners have raised more than £202,000! Thank you!
£3,100
FROG HOP
Harry and the Bainton Young Farmer’s held a Frog Hop in memory of his grandfather and raised over £3,100.
A huge thank you to all our supporters for everything you do to fund our vital support services and research.
PSPA CHRISTMAS 2024 ORDER FORM
Delivery and contact details (Please complete in BLOCK CAPITALS) You can also order at pspassociation.org.uk/fundraising/shop
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2024/001 Hummingbird Ornament
2024/002 Christmas Hare
each
per pack
2024/003 Little Town of Bethlehem £5 per pack
2024/004 Fox by Moonlight £5 per pack
2024/005 Peace, Love and Joy
£5 per pack
2024/006 Santa Over the Rooftops £5 per pack
2024/007 Robin on a Post-box £5 per pack
2024/008 Snowglobe £5 per pack
2024/009 Manger with Sheep £5 per pack
2024/010 Stuck Down the Chimney £5 per pack
2024/011 Carrying the Tree £5 per pack
2024/012 Jolly Snowman £5 per pack
2024/013 Gnome twin pack
£5 per pack
Orders up to £10 £3.50
Orders over £10 £5.50
Orders over £50 £8.50
DELIVERIES:
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PSPA CHRISTMAS 2024 PAYMENT FORM
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Just call 01327 322410 or email info@pspassociation.org.uk Date: / / I am not a UK taxpayer. Please do not send cash or postal orders. If your selection is not in stock PSPA reserve the right to substitute an alternative.
PLEASE RETURN THIS ORDER FORM TO: FREEPOST PSPA
When using our freepost address, just write FREEPOST PSPA – we promise it will get to us! Please note, writing our full address when using our freepost address can cause processing delays for Royal Mail and extra charges for PSPA of up to £2 per letter. Registered charity number England and Wales 1037087 and Scotland SCO41199. Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes MK9 3BN 01327 322410 | info@pspassociation.org.uk | pspassociation.org.uk FREE cotton shopping bag worth £5 on orders over £30* *Only whilst stocks last
CHRISTMAS COLLECTION 2024
Message in all cards: “With best wishes for Christmas and the New Year”
CHRISTMAS WISHES HARE
Size: 126mm x 126mm
HUMMINGBIRD ORNAMENTS
Colour: Peacock, Blue, Clear
PEACE, LOVE AND JOY
Size: 126mm x 126mm (blank inside)
SANTA OVER THE ROOFTOPS
Size: 126mm x 126mm
CARRYING THE TREE
Size: 126mm x 126mm
ALL CARDS ONLY £5 PER PACK OF 10
FOX BY MOONLIGHT
Size: 126mm x 126mm
LITTLE TOWN OF BETHLEHEM
Size: 126mm x 126mm
MANGER WITH SHEEP
Size: 126mm x 126mm
JOLLY SNOWMAN Size: 126mm x 126mm
Size: 126mm x 126mm
STUCK DOWN THE CHIMNEY
Size: 100mm x 150mm
GNOME TWIN PACK
5 of each design, Size: 126mm x 126mm