The Wire (Issue 10) Winter 2022/2023

ISSUE 10 Winter 2022/23

Scotland’s Bleeding Disorders Charity

World Haemophilia Day 2022

Launch of Women’s Group exhibition at Gallery of Modern Art (GoMA)

The International Women’s Quilt was launched on 24 September 2017 with women from around the world invited to participate in the making and embellishment of a quilt, contributing small swatches of materials from their own country of origin in order to bring the women together in a shared project.

It was agreed at the launch that the centrepiece of the quilt would be in the form of a tree; symbolising family, life, lifeblood and community. With fabric panels contributed from all around the world, and the vein-like branches of the tree reaching and spreading outwards, the quilt would be emblematic of the connectedness of the global bleeding disorders community and family.

(continued on pages 4 & 5)

Haemophilia Scotland welcomes new Director

ALAN MARTIN joined Haemophilia Scotland in February 2022 as its new Director, bringing with him to the role over twenty years of experience in business and charitable work.

Having launched his own communications company in 2003, Alan was responsible for the strategic direction, finance and growth of the organisation. As Managing Director, he provided leadership and encouragement to his staff and helped build a positive working environment; all essential attributes for a national charity like Haemophilia Scotland.

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New Director ~ Big Red Bridge Walk ~ Comic Book initiative

Haemophilia Scotland welcomes new Director

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CHAIRMAN: BILL WRIGHT

bill@haemophilia.scot

077855510456

DIRECTOR

Alan Martin

alan@haemophilia.scot

07309 779719

0131 295 0019

OPERATIONS MANAGER

Alex Whitteker

alex@haemophilia.scot

07930 316190

0131 295 0017

THE WIRE EDITOR

Hugh MacInnes

hugh@haemophilia.scot

Tel: 01851 810262

07787317936

CONTRIBUTORS THIS ISSUE:

Alex Whitteker

Bill Wright

Alan Martin

Julia Gordon-Smith

Iain Gordon-Smith

Holly Webster

Geraldine Harron

Susie Gill

Tracey Stone

Jay Gardner

Dr Gráinne O’Brien

Dr Sarah Kennedy

CONTACT DETAILS

HAEMOPHILIA SCOTLAND

Eric Liddell Centre, 15 Morningside Road, Edinburgh

EH10 4DP

TEL: 0845 874 4004

WEB: haemophilia.scot

EMAIL: hello@haemophilia.scot

Why not contribute your story to the next edition?

Over the past eleven years, Alan has also been a Trustee and Company Secretary for the Central Carers Association; a charity providing information and support to carers of all ages in the Falkirk district. As a Trustee, he has been involved in reviewing operational policies and reports, developing fundraising strategies and being part of recruitment process for new staff positions.

Having made the decision to pursue

a career in the third sector following the successful sale of his business, Alan was delighted to take on the role of Director at Haemophilia Scotland and use his particular skill-set to help make a real difference in improving the lives of people with bleeding disorders.

In his spare time, Alan enjoys spending time with his family, reading, computing, and has an extensive collection of tabletop board games, which he plays regularly with friends.

Raising awareness (and our step count!) at the Big Red Glasgow Bridge Walk

Thanks to everyone who joined us at The Big Red Glasgow Bridge Walk on Saturday 24th November! It was wonderful to catch up with old friends and make some new ones. We walked a distance of 10km, crossing many bridges and, importantly, helped raise awareness of our bleeding disorders community. Our friends from The Haemophilia Society brought the sunny weather up with them from London, so we were able to enjoy the walk in optimal conditions. It was even warm enough to grab a much-deserved ice cream towards the end.

Thanks to everyone who joined us on the day and donated to the fundraiser. We are really grateful for the support we received.

Success with funding for comic book project

GREAT NEWS! We have been successful with a funding application for a project for teenagers. Launching in the new year, we will work closely with a Scotland-wide charity, Magic Torch Comics, who will turn into a comic book the experiences and stories of teens across Scotland affected by a bleeding disorder. This resource will allow teenagers to share aspects of their personal lives in a fun and friendly format. It will also provide teens with an educational resource to share with their peers, family, teachers and anyone they interact with. This initiative will complement the existing portfolio of resources currently available.

Haemophilia Scotland will gather stories in focus groups at events arranged for teens in the new year. These events for teens will be our first since the pandemic, so we would certainly encourage teenagers to come along and reconnect with old friends and make new ones. Magic Torch will attend, host the focus groups and take the key messaging and stories before translating them into a comic book.

Keep an eye on our social media and website for updates on when and how you can get involved.

For more information on Magic Torch Comics, visit their website: https://www.magictorchcomics.co.uk/

WORK TO BE DONE

Bill Wright, Haemophilia Scotland Chairman

In the patient community we are all too familiar with the trials and grief of losing family, friends and those like us as the Infected Blood Inquiry (IBI) draws on towards a close, with its report due in 2023.

At the time I write, there is another funeral to attend – a lovely, kind man who gave us much time and support over the years. Despite a liver transplant, his health finally cut his life short.

Much attention among those affected and infected is focussed on the UK Government response to the recommendations of Sir Robert Francis on compensation arrangements for those affected by the scandal. Interim payments paid at the end of October 2022 are welcome, but much work remains to be done.

However, this story is not fundamentally about money; it is about recognition of what was done wrong and how we must approach such situations better in future. My own profound wish is that it will allow those affected to move on and most of all, where trust and respect has been diminished, it is reestablished and we can look forward rather than back. In Scotland, we have worked hard on some positive recommendations that we hope the Inquiry will support and help make the NHS and haemophilia services stronger and more focussed on putting patients first.

Strengthening haemophilia services has to top the list of desired outcomes that come out of the Inquiry. That might include steps that need to be introduced to our health services generally, such as easier access to our patient records and care plans for longterm or acute conditions. But we also need to secure the services of, for example,

dedicated physiotherapy support with expertise in bleeding disorders.

So, in the latter respect, revitalising the Scottish Inherited Bleeding Disorders Network has to be a priority to get that much-needed support. It is only by working with the staff in centres and with NHS and Government officials that we can achieve the sort of outcomes that are needed. Our Needs Assessment will also help shed light on where the priorities are. If you have not already completed it, please do so. That way we know what our members demand.

Finally, as well as a number of new faces in our Haemophilia Centres, we at Haemophilia Scotland also have some additions too. I am delighted that we have attracted some very able new forces on to our Board of Trustees who will, I have no doubt, help us bring forward some very sound thinking and fresh ideas for how we, as a charity, operate in 2023 and beyond.

Every year for WORLD HAEMOPHILIA DAY, we organise a fundraiser to raise funds to help us continue our work with supporting, informing and advocating for Scotland’s bleeding disorders community.

In light of the ongoing war in Ukraine, we decided to donate 50% of the proceeds of our fundraiser this year to the European Haemophilia Consortium’s (EHC) Emergency Displacement Fund. In total, we received £350 in donations plus £87.50 in Gift Aid, which brought the total to £437.50.

This means that £218.75 went towards our work at Haemophilia Scotland, while the other half of the money raised was donated towards the EHC’s Emergency Displacement Fund that will assist people affected by a bleeding disorder who have unfortunately been displaced by conflict. Thank you to all who donated to our fundraiser! We are extremely grateful for your support.

World Haemophilia Day 2022

Launch of Women’s Group exhibition at Gallery of Modern Art (GoMA)

The International Women’s Quilt , originally envisaged as a collaborative women’s project on 24 September 2017, with the completed quilt first exhibited at the Women’s Booth during the 2018 World Federation of Haemophilia Congress, which was held in Glasgow.

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On World Haemophilia Day this year (17 April), Haemophilia Scotland launched an exhibition featuring the quilt at the Gallery of Modern Art (GoMA) in Glasgow to help highlight the experiences of women affected by a bleeding disorder.

Haemophilia Scotland hosted sewing workshops at our office in Edinburgh and at the Glasgow Adults Haemophilia Centre. Mary Guzman-Blyth stitched the panels together and arranged for the backing of the quilt to be put on, with the backing fabric donated by our counterparts in Malawi.

The completed quilt was first exhibited at the Women’s Booth at the 2018 World Federation of Haemophilia Congress in Glasgow. It was an interactive booth that had people from around the world, sitting shoulder-toshoulder, cutting out and stitching fabric leaves onto the tree centrepiece. It was a talking point throughout the Congress with lots of people raving about it. This was significant because it was only the second time ever there had been a women’s booth at the Congress – so an acknowledgement how far things had come, but also an awareness that there is still more to do.

Nancy Brodie was approached by GoMA in 2019 and offered space to exhibit the quilt alongside women’s artwork from across Scotland that would be drawn from the quilt’s themes: family, well-being, women and superheroes. With the outbreak of covid in 2020, we had to adapt and ended up hosting workshops on the first Tuesday evening of each month, where women across Scotland affected by a bleeding disorder were able to connect, catch up and discuss the themes represented by the quilt.

On 17th April 2022 - World Haemophilia Day - we launched the exhibition at GoMA. The exhibition was the output from these workshops and representative of the experiences that women affected by a bleeding disorder

in Scotland and abroad have, and also helped further raise awareness of the issues by sharing their stories.

Acknowledgements:

Jane Aird, Helen Baird, Alicia Blyth, Mary GuzmanBlyth, Abby Bissett, Eva Bissett, Leone Bissett, Nancy Brodie, Lady Bugs, Jade Caulfield, Marjorie Chalmers, Glasgow Haemophilia Centre, Cheryl D’Ambrosio, Maria D’Ambrosio, Teresa D’Ambrosio, Women’s Group of Hemophilia Federation India, The Fisk Family, San Francis, Lara Fullerton, Susie Gill, Julia Gordon-Smith, Geraldine Harron, Nabila Husseni, Stitches Women’s Initiative, Joanne Kirkham, Ishbel MacDougall, Helen Mason, Nuala McCarten, Deborah Moulds, Alexis Nave, Carol Nave, Danielle Nave, Joan Rae, Sheilane Ricot, Mary Sharkey, Monica Singh, Kyle Stone, Pat Stone, Tracey Stone, Iris Vincent, Susan Warren, Collette Wick, Juliana Wick, Pamela Wick, Lynn Wild.

Our thanks to GoMA for allowing us to exhibit there, and special thanks to Joan Gallagher for hosting the workshops for our women’s group and organising this exhibition.

The following represents the responses and experiences of several people who were engaged in the project:

GERALDINE HARRON:

In the GoMA, a quilt and art exhibition could be used to inform, begin conversations with new thoughts, having a look inside ourselves as medicine and science do for diagnosis and interventions. We used themes and there

The International Women’s Quilt being exhibited at the Gallery of Modern Art (GoMA)

was inspiration and support; there was the presence of our quilt, on which I put a little leaf on that says, “These stitches bind us,” with lots of connotations. We all have a lot of shared things, now we have something more.

Like a blood test extracts life-force from deep within, mixing it with things that preserve or interact to see results, get answers under the microscope of creativeness. Timed bleedings tests weigh our losses, similar to creative juices flowing into tangible expressions. We might mark a canvas with paint; I thought about a portrait in blood.

I am more creative than this, and prefer pretty subparticles, the blood under a scope. Beauty rather than dramatic art helps through being positive, better for viewing; avoiding difficulty or pain is a point worth making.

I have always loved art in comics. Even before I could read the words, I longed to be Batman. I was really pleased with the theme of Superheroes: they have flaws, hidden suffering, brave approaches to life. We might be saved by them, like our medical teams. It seemed worth taking part, at the very least as therapeutic for myself, and to feel part of a community, all of us looking beyond the cloaked mysteries.

Imagining my work displayed at the GoMA was a huge incentive and in equal doses raised the bar. I decided to be brave; exposure in a self-portrait using water-based paint. A recognisable image, vague, masked, that seems to be me. I was concentrating on the problems I have with bleeding, scars, healing and stigma. Making a work of art from ideas, while exploring my strengths and the hero in mealso heroes of mine - that anyone looking in might find something of themselves, or take away some thoughts and questions.

I wanted it known that women have bleeding disorders. We are heroes for trying to get on with our life, coping with mildly inconvenient to severely life-threatening bleeding and pain. I wanted women to ask themselves if they needed to be tested to get support and help make life better. The experience has been interesting and exciting. Lots of family and friends have visited the exhibition, and I have several times too. I have chatted with people who were there and I enjoyed their questions and lovely words about everyone’s work. My work is about being complete and sharing; I gave myself with love.”

SUSIE GILL:

I got involved in the exhibition after joining Haemophilia Scotland’s Women’s Group. I found Haemophilia Scotland when I was struggling with anxiety and depression following the traumatic birth of my son. Through Haemophilia Scotland I was able to seek support from Gráinne O’Brien, and she recommended the Women’s Group who were meeting online each month. I was nervous at the thought of meeting new people online, but I’m really glad I did as everyone was lovely. It was at this point I agreed to make a piece for the exhibition. I’m not artistic at all, so this was daunting, but I really enjoyed making it. It allowed me to consider the emotions I have felt about my bleeding disorder, but also the challenges I have overcome throughout my life.

The exhibition itself was a great day for me. It was the first time I had met with people who could personally relate to the experiences I have had and for the first time I didn’t feel alone in my bleeding disorder. I’m so grateful to Alex, Joan and everyone else involved in the organising of the exhibition as it allowed us to come together as a community to share our artwork and experience of living with a bleeding disorder.

I hope the exhibition raises awareness of bleeding disorders as they are far more common than people expect. And for people living with a bleeding disorder, I hope the exhibition raises awareness of the Haemophilia Scotland charity, as they provide such excellent support for people and families affected by bleeding disorders. I wouldn’t be where I am today without their support, and I will be eternally grateful for that.

TRACEY STONE:

Involvement in this project provided an escape from the isolation of being a carer. I was interested to learn about art and artists at the same time as raising awareness of haemophilia and blood disorders and, crucially, it enabled friendships and support in our community.

Presentation on psychological support services delivered by Dr Grainne O'Brien on World Haemophilia Day

Haemophilia Scotland Chair, Bill Wright speaking at the event

Take part in our Needs Assessment Survey

HAEMOPHILIA SCOTLAND is undertaking our second ever Needs Assessment, which will help us to find out more about the life experiences and current challenges faced by people affected by bleeding disorders in Scotland. Some of you may have taken part in our first Needs Assessment back in 2016 and may be familiar with it. This is a Scottishbased survey of people with a bleeding disorder and their families or carers who benefit from Haemophilia Scotland’s support or are receiving treatment via a Haemophilia Centre.

Our aim is to gather vital information on the following topics:

• Health and wellbeing

• Lifestyle

• Employment & Education

• Treatments

• Issues affecting specific groups with bleeding disorders: children, women and older people

This research will be used to improve the services and support provided for people with a bleeding disorder and help us to identify the priority areas to advocate for change on behalf of the community.

The survey will be running until Friday 10th February so there is still time to make a real difference and make your voice count.

You can complete the survey online at the website address below or, if you prefer, you can contact our research team to arrange a time where they can complete the survey over the telephone with you instead.

https://online1.snapsurveys.com/YourVoiceCounts Abi Sharp, Senior Researcher: abi@thelinesbetween.co.uk or 0131 235 2012.

The analysis from the survey will be presented in a final report which will be made available before Easter 2023. REMEMBER, YOUR VOICE COUNTS!

Transitioning from child to adult clinical services

IN ISSUE

9 OF THE WIRE, school pupil HOLLY WEBSTER generously provided a window in to her life as a teenager who endured 116 days of complete isolation from friends, neighbours and the wider family following advice from her clinicians to shield during Covid because of her complex medical history.

Holly explained at the time: “As I have Von Willebrand, plus a genetic disorder called Hereditary Spherocytosis, and I’ve also had my spleen removed, we were told by the government to shield.” However, she wouldn’t be quite enduring this period of isolation totally alone, adding, “We decided as a family that we would all shield so that I could be with my mum and siblings and not have to stay alone in my room, which wouldn’t have been very nice as my family mean the world to me.”

The enforced isolation, however, further helped reinforce already strong family bonds. “As a family

we were able to become closer than ever, but we still had our own spaces to go and relax in and breathe. This was vital for all of us as it allowed us to just be at peace with ourselves and do what we love to do, separately. We had movie nights and we even had a tent in our living room!

“One of our biggest treats was having an afternoon-tea picnic most Saturdays made by local businesses, which was always really yummy and quite fancy too.”

Now with the Covid pandemic finally on the wane, Holly’s life moves on, having left school and transitioned from paediatric care and children’s support to adult medical services.

~~~~~~

Holly takes up her story, offering a brief update on how life is treating her at present.

“So, here I am approaching 18 very quickly. I have now left school and also left children’s services for my von Willebrand.

“I was introduced to my new team a few weeks ago and told how adult services work,

which means I am now seen only annually, unless I am poorly or need any procedures done. I will miss the team at Ninewells.

“I have given up my love for dancing and will help my teacher teach the little ones. My last show was emotional. Now, learning to drive and going to college to bring on adulthood!”

Listen, Share, Donate fundraiser

By Julia Gordon-Smith & Iain Gordon-Smith

Hellooo, LOVE, BLOOD and COVERS Lovers!

Brilliant news and congratulations to the Contaminated Blood Fund (CBF) in East Lothian and in Spain!

We can report that in well under a decade, the CBF has SUCCEEDED in raising their target sum of £40,000 towards the Willow Tree Sculpture set for - we all hope - Edinburgh City Centre.

Love, Blood and Covers wish the very best to all the team at the Contaminated Blood Fund. Hopin’ and prayin’ you achieve the best possible site for the Willow Tree Sculpture. There’s mounting and maintenance costs too and, as we all know, costs have gone up. As Curtis Mayfield famously sang, “Keep on keeping on,” and that’s what we will do.

Love, Blood and Covers supports the Contaminated Blood Fund by raising awareness too. We sing and play with a vengeance. The intention and the ‘Why’ of the Memorial Tree is always to the fore. My family is personally affected by the Contaminated Blood Scandal with the loss of a family member to the disaster.  Informing and sharing our cause through music; connecting with others, inside and

out of our community, is what we aim to do with our classic soul, blues and rock tracks.

Last year in 2021, LB&C managed nearly a third of our £5000 target in VirginJustGiving. That has now stopped and GoFundMe is now the funding platform for Love, Blood and Covers. Thank you to everyone who helped so far!

This summer we’ve recorded six new tracks, and with a whole album worth of great music, plus a fantastic live sound (with the Infected Blood Inquiry nearing completion in 2023), we know there’s going to be a lot to sing about.

linktr.ee/lovebloodandcovers

To learn more about the Memorial Tree go to:

https://m.facebook.com/ contaminatedbloodmemorial/

You can find Love, Blood & Covers on Spotify, Apple and iTunes, also on Instagram and Facebook. For more information and snippets of the tracks head to:

http://www.lovebloodandcovers.com

LISTEN, SHARE, DONATE!

Go Karting for people aged 50+ affected by a bleeding disorder

On Saturday 17th September, we enjoyed a day out at Knockhill Racing Circuit with people aged fifty and over who are affected by a bleeding disorder.

The race itself proved to be a pretty tight affair for the first two places, with Andy Aird pipping Blair Underwood to the top spot with third place awarded to Alex Whitteker.

If you’re aged 50+ and affected by a bleeding disorder, we would love to hear from you. As a person with a bleeding disorder, or indeed a family member of someone with a bleeding disorder, are there areas where information or support is inadequate or could be improved? Is there anything you believe that Haemophilia Scotland could do to plug the gap? What types of activities would you like Haemophilia Scotland to organise in the future?

Please feel free to reach out to Alex with any suggestions or concerns at alex@haemophilia.scot, or give him a ring.

(Contact numbers on page 2).

Introducing the Haemophilia Scotland Trustees

Bill Wright:

Bill lives with an inherited bleeding disorder and was the founding Chair of Haemophilia Scotland when it was established in 2012 as an independent charity. He brings with him a wealth of experience in the third sector and takes a lead on the contaminated blood and blood products campaign. He also serves on the Steering Group of the Scottish Inherited Bleeding Disorders Network (SIBDN).

Gregor McInnes:

Gregor has worn many hats in his IT career, including Technical Lead, Architect, Relationship Manager, Strategist, Project Management, Support and Disaster Recovery Specialist. As a result, he adds some real digital savvy to the board. His experience in operating his own consultancy is also very relevant to running a small charity such as ours.

John Dearden:

John lives in the West of Scotland and has an inherited bleeding disorder. His work experience covers local authorities, property companies, facilities management and the health service where he worked as a chartered governance professional. He brings to the board knowledge of law, regulation, board procedures, risk and people management.

Joanne Kirkham:

Joanne is a carrier of Haemophilia, undiagnosed until after the birth of her twins in 2011. Her son has severe Haemophilia A with inhibitors. Joanne and her family have been active members of Haemophilia Scotland since 2013. She has participated in many of Haemophilia Scotland’s family and women’s projects, as well as family events organised by the European Haemophilia Consortium (EHC). She works as an Advocacy Worker for Kindred, a charity supporting parents of children with additional and complex needs. She is a passionate believer in supporting a person holistically, understanding the need to take into consideration a person’s physical, mental, and social wellbeing to ensure that they are fully supported.

Joanne recently graduated with a first-class honours BA (Hons) Open degree, studying Young Lives, Parenting and Families and Approaches to Mental Health. Joanne also has a COSCA certificate in counselling skills.

Adam Davidson:

Adam is 38 and has mild type 2 von Willebrand’s. He wasn’t diagnosed until high school and feels fortunate not to have had too many issues as a result of his condition. He has a 6-year-old son who also has the condition and suffers from frequent nosebleeds and regularly requiring treatment. Adam joined the board feeling he could contribute because of his history of having a bleeding disorder and his previous experience as a trustee with other organisations. He is particularly focused on the needs of children with bleeding disorders, raising awareness for those who are undiagnosed, and fundraising.

Jay Gardner:

Jay is aged 23 and studying Acting. Over the past couple of years, he has been involved with Haemophilia Scotland, The Haemophilia Society and the European Haemophilia Consortium; all looking to pave the way for today’s youth affected by bleeding disorders. He has his own online web series on YouTube called Diaries of a Haemophiliac where he advocates about living with Haemophilia A.

Kazeem Alabi:

Kazeem is a medical doctor by profession, with an interest in public health, and a PMI-certified Project Manager. Throughout the course of Kazeem’s professional career, he has worked in various capacities that have involved both clinical and non-clinical practices. Kazeem is passionate about and committed to charitable causes, especially ones that help the vulnerable people in our society, like the elderly, children, and people who are chronically ill or disabled.

Seeing the positive impacts and changes his efforts have brought about in other people’s lives is a huge source of motivation and a driving force for Kazeem. His experiences in medical practice and in his personal life have allowed him to understand the feelings of people who have bleeding disorders and their families. These also strengthened his determination to join the board.

Becoming a volunteer trustee with Haemophilia Scotland will provide Kazeem with the opportunity to lend his support to the causes that are being advocated for by the organisation and to assist in achieving its strategic goals and objectives. Kazeem is keen to support and offer the charity his skills and experience in strategic program planning, policy analysis and development, program management, strategic partnerships, administration and research.

Kazeem will collaborate with other Board members and all internal and external stakeholders to ensure people living with bleeding disorders and their families can benefit from Haemophilia Scotland’s range of projects and activities.

Katie Mackie:

Katie has a nephew with haemophilia, and is a carrier of the haemophilia gene. Katie’s nephew lives a full life, but she has seen how living with the constant pain caused by haemophilia has affected his confidence levels.

The Infected Blood Inquiry highlighted the tragic outcome for victims infected with contaminated blood and raised the profile of haemophilia. However, Katie still feels the public has little awareness of this condition and the impact it has on individuals suffering from this rare condition and on their family and friends.

Clearly, the Inquiry will have taken up a vast amount of Haemophilia Scotland’s time and resources. Now that the UK Government has announced interim compensation payments, there is an opportunity for Trustees to raise

awareness of other issues impacting on haemophiliacs and to highlight new treatments that are being developed. Katie hopes the knowledge she has gained through her work in public affairs and public relations and her understanding of Scottish Government structures would assist Haemophilia Scotland advocate with Scottish Government Ministers and officials, particularly when looking at the funding of treatments for bleeding disorders so that people with this rare condition are able to live a fulfilling life.

Thomas Lorenz: Whilst Thomas does not suffer from a blood disease, he has first-hand experience in his immediate family of how disability and chronic illness affects an individual and those around the individual.

During the first quarter of 2022, The Haemophilia Society started talking to Thomas about producing an advocacy piece on blood diseases and the workplace. The research on the matter really piqued Thomas’ interest as he was able to relate to the effects of bleeding disorders on individuals and those around them through his own and his family’s personal experiences.

Reviewing the objectives and challenges that the charity currently deals with, Thomas feels that he can add value by bringing relevant experience and a skill-set gained in the corporate world. Thomas has been looking for a cause that really resonated with him and that he could support as trustee, and supporting Haemophilia Scotland as an active Trustee provides him with an opportunity to ‘give back’.

Clan Gathering & Haemophilia Scotland AGM 2022

On Saturday 22nd October, we held our Clan Gathering & AGM at Birnam Arts Centre. This was our first ‘all-in’ event together since the pandemic and provided an opportune time to reconnect with each other.

Our guest speakers at the Gathering were psychologist Dr Gráinne O’Brien and psychiatrist Dr Sarah Kennedy who spoke on well-being and selfcare as well as offering some practical exercises on mindfulness.

At the AGM, Haemophilia Scotland Chair, Bill Wright, gave his annual report, followed by Treasurer, John Dearden, who delivered the annual accounts. We said goodbye to Graeme Malloch, who retired as a trustee, and welcomed new members to the Board: Katie Mackie, Kazeem Alabi and Thomas Lorenz. A brief biography

of current Haemophilia Scotland Trustees is offered below.

Following lunch, there were group discussions on a number of relevant issues, such as mental health, the need for and current availability of physiotherapy, and the role of the patient organisation. These group discussions provided a chance

for people to share their personal experiences, learn from each other and offer feedback so we can work towards ensuring people affected by a bleeding disorder in Scotland receive the support they need.

We thank everyone who attended, particularly those who had travelled some distance.

Concerns over LloydsPharmacy Clinical Homecare (LPCH) home delivery service and bleeding disorder treatments

Haemophilia Scotland received a response from NHS National Services Division regarding concerns raised about LloydsPharmacy Clinical Homecare’s service delivery during 2021/22, which we are reproducing below. NHS Scotland as a whole has operated under very difficult circumstances over the past two years with many haemophilia teams having to absorb additional workload. Unless it is an emergency, we would recommend using the contact details below for LPCH to raise any concerns over incorrect or delayed delivery.

Lloyds Pharmacy Clinical Homecare (LPCH) response to Haemophilia Scotland’s inquiries regarding ongoing problems with its home delivery service, including bleeding disorder treatments:

CURRENT POSITION

In recent months, there have been significant capacity constraints within the medicines homecare and home delivery market, and in particular at LPCH. The capacity constraints have largely been due to Covid-19 related sickness and self-isolation and recruitment and retention difficulties across the sector, specifically in customer services. This affects all homecare therapy areas, including the service for products to treat inherited bleeding disorders. Unfortunately, LPCH service issues progressively worsened throughout 2021 and persisted into 2022. NHS NSS have been meeting with LPCH regularly to understand the position, support in recovery and report back to the Health Boards in Scotland. LPCH have made improvements throughout this period. However, NHS NSS recognises that there are still significant performance issues with LPCH. The current key pressure points at LPCH are within customer services, and in particular answering inbound patient phone calls. Low answer rates and high call wait times have persisted throughout February and March, and this is a focus of LPCH efforts at the moment.

ACTION BEING TAKEN TO ADDRESS THE CHALLENGES

Newly recruited customer services staff are being trained, but the realisation of benefits of this will take time due to the time taken to fully train. LPCH are reallocating resource within their Glasgow site to support the inbound lines, and have remote support from staff at their English site where possible. Recruitment of additional staff is continuing with plans in place to reach target staffing levels by the end of April. A small improvement in average call wait times and percentage of calls answered has been evidenced last week, with stabilisation and sustained improvement in these areas being expected of LPCH in coming weeks.

CONTACTING LPCH AND RAISING A CONCERN

Patients can contact LPCH using the email address: enquiries@LPclinicalhomecare.co.uk.

Emails should be acknowledged within 48hours, although this response may not be a complete resolution of the enquiry.

Alternatively, patients can call LPCH by calling 0345 2636 135 (Monday to Friday 8.00am – 6.00pm). It is recommended to phone either in early morning or late afternoon-evening to avoid busy periods. Patients are encouraged to use these routes to raise standard service level issues as long as they have a sufficient buffer stock of their products and appropriate ancillaries at home. If patients do not have sufficient buffer stock or appropriate ancillaries, they should contact their local haemophilia centres to make sure they are fully aware of the problems being experienced and to provide support. The clinical team may also be able to escalate issues with the team at LPCH and raise any official complaints with National Procurement for investigation. Deliveries of inappropriate ancillaries, insufficient labelling or similar should also be brought to the attention of the centres.

ALTERNATIVE WAY FOR THE PATIENTS TO OBTAIN MEDICINES

The clinical team will be able to provide short term support in arranging a supply of haemophilia products from the hospital until the next LPCH delivery can be arranged. NHS NSS continue to work closely with LPCH to improve service levels back to the standard expected. LPCH have been operating in Scotland for many years, and serve a large number of patients throughout Scotland. Up until recently, the standard of service provided by LPCH was very high, and the company was well regarded by the NHS. This has obviously been a very difficult year and NHS National Services Scotland will continue to work with LPCH to return to the high standard levels which patients should expect throughout Scotland.

Pairing initiative aims to build one-to-one support relationships

The Haemophilia Scotland Pairing Project is a ‘buddy programme’ for people affected by a bleeding disorder, which aims to connect you with information and support through mentoring-style pairing relationships.

THE HAEMOPHILIA SCOTLAND

PAIRING PROJECT is a ‘buddy programme’ for people affected by a bleeding disorder that aims to connect participants via focused information and support through mentoring-style pairing relationships.

Participation in the Haemophilia Scotland Pairing Project should improve your ability to self-manage your condition and offer better access to relevant information and support. In addition, you will be able to build a support network and enjoy better access to the necessary information and resources required to selfmanage your condition.

In order to be part of a Pairing Project, you will need to meet with a Haemophilia Scotland staff member for an initial face-to-face assessment. Following this, and once you are paired with someone, Haemophilia Scotland will host an introduction to enable both participants to meet up somewhere public, such as a café, for example. There will be a monthly check-in, which will take the form of a short email survey that you will be

asked to complete, followed by a midway online survey after six months.

We launched this project prior to the pandemic but put it on hold when we went into lockdown. We will be re-launching in 2023.

If you would like further information about the project, please feel free to email us at:

hello@haemophilia.scot

Alternatively, you can call Haemophilia Scotland on 0131 295 0017

Amazon announces closure of AmazonSmile

AmazonSmile was launched ten years ago to offer online shoppers the same range of products and prices, but with the option to nominate a ‘good cause’ to receive a small proportion of the price of the goods being bought, which represented 0.5% of the sale value of the purchased items (excluding VAT, returns and shipping fees).

Although the proportion of the sale value going to a charity was modest by any standard, it did however empower the online shopper to be able to specify which charity they chose to donate to.

Announcing the closure of the platform in an email to individual donor participants, the online giant said that it plans to, “wind down AmazonSmile by February 20, 2023”. In seeking to justify the withdrawal of the

shopping option, it added, “AmazonSmile represents a very small portion of the total charitable contributions made through our other programmes, which we estimate at more than £100 million in 2021”.

With turnover of over £6 billion generated in the UK during 2021, perhaps Amazon could better demonstrate its support for the charity sector in future by offering the same terms on its main platform as it did on AmazonSmile and allow its millions of online shoppers to choose where they wished to make a small personal donation as part of his or her ‘shopping experience’?

Itwas an absolute pleasure to attend the WFH congress this year in Montréal, the home of the WFH. It was revitalising to meet old and newer members of the community and medical practitioners from around the globe.

During my time at the WFH I went to several talks, including, Fit, Young and Vital - things we as patients can do to live a healthy lifestyle. Moving on from Covid as a community,

there is ageing with Haemophilia and the different perspectives as medication continues to advance, pain in women and girls with bleeding disorders and the difficulties they face with diagnosis and treatment. Some of my own personal highlights from the Congress included being able to meet people with Haemophilia that I have followed online for some time, such as Patrick James Lynch and Chris

Bombardier, as well as other people with Haemophilia I’ve known online. And a bonus was being able to meet entertainer Greg Hemphill in the airport of all places!

A small selection of photographs taken by Jay at the 2022 WFH Congress held in Montreal

Report by Jay Gardner

Gene therapy now offers effective treatment for Haemophilia B

GENE THERAPY FOR HAEMOPHILIA B recently moved a step closer to being licensed for use in the UK after the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) has adopted a positive opinion, recommending conditional marketing authorization (CMA) of etranacogene dezaparvovec. The European Commission will usually accept this recommendation and, consequently, a MHRA license for use in Great Britain can then be granted on this basis.

ETRANACOGENE DEZAPARVOVEC was developed by Uniqure and will be marketed by CSL Behring as Hemgenix and is also the first gene therapy for people living with hemophilia B in the European Union (EU) and European Economic Area (EEA).

CSL reported on its website: “The positive CHMP opinion is based on findings from the pivotal HOPE-B trial, the largest gene therapy trial in hemophilia B to date. These findings showed that haemophilia B patients treated with etranacogene dezaparvovec demonstrated stable and durable increases in mean Factor IX (FIX) activity levels (with a mean FIX activity of 36.9%) which led to an adjusted annualized bleed rate (ABR) reduction of 64%. Following infusion of etranacogene dezaparvovec, 96% of patients discontinued routine FIX prophylaxis.” Although the above pertains to the NHS in England, we expect similar considerations to take place in Scotland on whether the Scottish Medicines Consortium (SMC) will recommend the treatment for use in Scotland. We will keep our members updated on any developments.

AS A CHARITY WITH LIMITED MEANS OF GENERATING INCOME, we are heavily dependent on the support of sponsors and the fundraising efforts and generosity of our members. Individuals might not always be in a position to contribute money directly in support of the charity, although there are other ways of doing so that does not cost the giver anything.

An option for online shopping that can support Haemophilia Scotland is easyfundraising, the UK’s biggest charity shopping site. The www. easyfundraising.org.uk shopping platform has over 4,200 registered retailers that have helped raise over £31million for good causes. Donation amounts vary between retailers, but an average donation is 5% of your spend. The donation amount is shown next to each retailer listing.

Have a birthday coming up or a special celebration to commemorate? Why not set up a Facebook Fundraiser to encourage your friends and family to make a donation to us. It’s quick and simple and a good way to raise awareness and funds!

For a link to set up a Facebook Fundraiser, please visit the Haemophilia Scotland fundraising page at:

https://haemophilia.scot/its-easyto-raise-funds-for-haemophiliascotland/

We value your support

F U N D R A I S I N G : FUNDRAISING: Providing the lifeblood for Haemophilia Scotland the lifeblood for Haemophilia Scotland to continue suppor ting its members to continue supporting its members

Psychological support during the post-Covid period Psychological support during the post-Covid period

The Covid-19 pandemic UK lockdown began on 16th March 2020 when Matt Hancock told the House of Commons that all unnecessary social contact should cease. Many of us thought this ‘lockdown’ would last for a few weeks. We had no idea what life would be like over the coming years but, from that day on, we were waiting for news that the pandemic was over and we could go back to living our lives. Few of us thought we would still be living with Covid in 2023. The long-awaited lifting of legal restrictions has been celebrated by many. However, for some of us, the springing back into life as it was, pre-lockdown, has not been without its challenges.

Covid and its impact is still here, and how we adapted to life during these past few years has changed us all. How at risk we feel from the invisible presence of Covid ranges from a feeling of avoiding a ‘mild cold’ to fearing life-threatening complications, and some are living with ‘long Covid’ symptoms. It is therefore unsurprising and understandable that there are vastly different and polarised opinions circulating on how we should be moving forward as a society and with our individual lives.

Just as the symptoms and the after-affects for COVID varied, so too have our experiences of the vaccine. Some may have chosen to be vaccinated, others not to be vaccinated, while some may not have been eligible. Some people felt very unwell after receiving the vaccine, while others felt nothing more than a sore arm.

Television and social media have marketed the image that a release from ‘lockdown’ is being experienced by most as a burst into freedom, a return to the life of pre-2020. For many of us, the adjustments made during lockdown cannot simply now be reversed overnight, nor do we wish them to be. Not only Covid happened during ‘Covid’! The usual changes that happen over time happened alongside Covid, such as other health, economic and family events. Therefore, we cannot return to life as it was; the present day is different to March 2020 for lots of reasons.

There were many aspects of lockdown which made life easier, less pressured: more time alone or at home with family; less time spent with people or in places we would rather not be; increased flexibility at work; or more time outdoors enjoying newly discovered interests and hobbies. For others, life became more challenging due to shielding, being furloughed or the stress of homeschooling alongside other life demands. The increased isolation has led to loneliness for some. As the world has opened and socialising invites increased, some have described excitement and relief, whilst others have experienced increased anxiety.

Damian Barr highlighted the unique and individual experience of Covid in his comment that, “We are not all in the same boat. We are all in the same storm. Some are on

super-yachts. Some have just the one oar”. It is important that we acknowledge our own unique experiences of recent times - the good and the bad - and do not compare ourselves in an unhelpful way with others.

We have the opportunity at this time of flux to look back on what has helped us to get through these challenging times. What have we learned about ourselves, our family and friends, and about the society we live in - what has helped us to cope and what were/are our own personal struggles? If we can learn anything about how it has affected us for better or for worse, we may be able to use this knowledge to strengthen ourselves for the future and to help us deal with the aspects of the current time we are still finding difficult.

Some tips to consider are:

1. Be patient with yourself and move at a pace that is helpful for you. It may be very tempting to say yes to everything. Remember that there is no pressure to jump back into a busy schedule. Do not compare yourself with other people. Everyone has had different pandemic experiences. Take it step-by-step to build up your confidence.

2. It is important not to avoid socialising completely, although this may be tempting, especially if you are feeling anxious. Try to set yourself small goals, starting with activities that are the most important to you, such as spending time with the people who matter most to you. Start small and gradually build up.

3. Routines can be very helpful for our well-being. Ideas such as: ensuring you have breakfast every day; having regular bedtimes and waking up times; or scheduling protected time for hobbies could be considered.

4. Talk to your family and friends about any worries or stresses you may have. They will want to be able to support you. They may appreciate the opportunity to speak about their experiences. Speaking with people we trust can be very helpful. We can release some of the stress, share our burden and problem-solve issues together.

5. Prioritise and make time for regular self-care and relaxation. This may include activities such as daily walks, specific relaxation exercises, or playing games online with friends. There is a webinar available on the Haemophilia Scotland website with more ideas about self-care:

https://youtu.be/1hjCNJl11LE

Living with the restrictions and unpredictability of Covid has been challenging for people. These feelings of anxiety and uncertainty about ‘returning to normal’ are likely to pass with time for most. It is important that we have patience with ourselves. Some helpful guidance and advice about well-being and managing our mental health can be found at:

Home - Wellbeing Lothian (www.wellbeinglothian.scot)

The Scottish Haemophilia Psychological Support Service is staffed by Clinical Psychologist, Dr Gráinne O’ Brien, and Consultant Psychiatrist, Dr Sarah Kennedy.

The service provides psychological support to individuals and families affected by inherited bleeding disorders in Scotland. If you would like to access the service or have any questions about the service, please phone 0131 242 1270, or speak with your local centre.

Clinical Psychologist

Dr Gráinne O’ Brien

NEWS UPDATES FROM AROUND SCOTLAND’S HAEMOPHILIA CENTRES:

Edinburgh Royal Infirmary

The Edinburgh Royal Infirmary Haemophilia Centre has received funding to employ a physiotherapist, and we are pleased to report that the physio post is now in place. The new appointee has previously worked in the Edinburgh Centre and will be a familiar face to many.

The Edinburgh Centre has also established a Nurseled Telephone Clinic that is up and running to allow patients to get some quick advice without having to await a doctor’s review.

Glasgow Royal Infirmary

The West of Scotland Adult Haemophilia and Thrombosis Centre, based at the Royal Infirmary, has a new Band 5 nurse working in the unit. Derek Coulter has many years of experience in haematology and will be a welcome addition to the team at GRI.

The Glasgow Adults unit now also has a generic email address that can be used by patients to contact the team should they have any appointment queries or changes to advise of.

You can get in touch with the unit at:

GRI.HaemophiliaCentre@ggc.scot.nhs.uk However, any urgent issues must still be called in through the usual number: 0141 201 6622 / 6619

CORPORATE MEMBER ACKNOWLEDGEMENTS

Novo Nordisk has sponsored Haemophilia Scotland via purchase of the Platinum Membership package. Novo Nordisk have had no influence on the content presented, unless where stated.

Sobi provides funding and support to Haemophilia Scotland as a Platinum Corporate Member. Sobi has no control or influence over the Haemophilia Scotland website or the material it produces, unless where stated.

Roche Chugai provide funding and support to Haemophilia Scotland as a Silver Corporate Member.

Roche Chugai has no control or influence over the Haemophilia Scotland website or the material it produces, unless where stated.

We are very pleased to feature in this issue of the Wire the Loanhead Under 11s Football Team, who look extremely smart in their new Haemophilia Scotland strips. Our grateful thanks to the team for their superb support and for raising awareness of the Scottish bleeding disorders community.

Every Penny Counts!

FUNDRAISING is becoming an increasingly important priority for Haemophilia Scotland as we strive to meet the various objectives that we set ourselves during the course of the year.

Covid and ever-challenging economic conditions means that every penny raised or received from private or public sources will be put to good use.

By way of example, relatively modest sums can go a long way in offering new or continuing services and support to our members:

Special thanks are also extended to the Danderhall Miners Club who, as well as Loanhead Under 11s, have been very effective in raising awareness, through local football, of Haemophilia Scotland and the people with a bleeding disorder that we support.

£5 helps us with postage of a newly-diagnosed family pack

£10 allows us to make a support telephone call

£20 supplements the cost of our webinar-hosting platform

£35 supplements an honorarium for a guest speaker on an online event

£50 provides vital volunteers with branded merchandise

£75 makes it possible for us to create and send out flyers and posters for all the Centres

£125 allows us to have an expert speaker for an online event

£300 lets us organise an online webinar event

The Eric Liddell Centre, 15 Morningside Rd, Edinburgh EH10 4DP

WEB: haemophilia.scot

EMAIL: hello@haemophilia.scot

TEL: 0845 874 4004