Florrie’s story: “being open is sometimes all it takes” A guide to integrated care systems 10
17
14 Meet Kathryn Tyson, the Chair of our Board of Trustees A lasting legacy of support: Honouring Raymond Briggs
Calendar:
August:
28 – September 1 - 28th International Meeting on Dialogical and Reflective Approaches to Psychosis and Other Challenging Mental States
30 – Grief Awareness Day
September:
5 – 20 – GAMIAN-Europe Lived Experience Art Exhibition at our London office
10 – World Suicide Prevention Day
23 – 29 – National Inclusion Week
October: Black History Month
ADHD Awareness Month
10 – World Mental Health Day
13 – 19 OCD Awareness Week
Editorial team: Sophie Bray and Alice Clifford
Contributors: Davinder Kaur, Rachel Hastings-Caplan, Amanda Thomson, Kat Allin, Karishma Pindoria, Morag Campbell, Lewis Chambers, Dominique Toyra
Design: Marie Havard and Rebecca Allen
Print: Fretwell
Views expressed in this magazine do not necessarily represent those of Rethink Mental Illness, unless agreed by the Board of Trustees. For reasons of confidentiality the testimonials used sometimes do not relate to the individuals photographed.
Welcome to your summer issue of Your
Voice.
After months of speculation and an intense election campaign, we now know we will be working with a new Labour government.
For any new government, this is a time of immense scrutiny as lots of important issues compete for attention. During this important period we’ll be working to make sure mental health, including the importance of carers, is high on the agenda and call on all new members of parliament to be allies in the fight to fix our mental health system. We’re calling on the new government to deliver:
• A long-term cross-government strategy to improve mental health across society.
• Services which not only support people in crisis but are also geared towards prevention.
• Long-overdue reform of the Mental Health Act to give people more of a say in their treatment when they’re acutely unwell.
Rest assured we will continue to campaign on all of these issues, which we know directly affect many of you day to day, and I’d like to personally thank you for your valuable support as a member of our charity.
With very best wishes,
Mark Winstanley Chief Executive
Exciting changes to our membership offer
In June we launched our refreshed membership offer, and we’ve been working hard to ensure it offers good value through a variety of useful benefits and regular, timely information.
What’s new?
The same offer for all
We now have one membership offer with two pricing tiers; waged and unwaged. You all receive Your Voice in the post, no matter which price you pay.
Your Voice makeover
Our member magazine has grown, with a fresh look and larger font size for better accessibility.
Welcome pack
New members are sent a branded tote bag, membership card, and information about the organisation and the wide variety of work we do.
Exclusive webinars
Our quar terly webinars cover topics like Advocacy and Social Inclusion, with our most recent focused on Influencing the new government on mental illness. Your invitation to these exclusive webinars is emailed to you, and each webinar is recorded and shared in the members section of our website afterwards if you’re unable to attend live.
Creative Corner
We know many of you are very creative, so you can now submit your art or poetry to be showcased in a special section of our website or in future issues of this magazine.
As a member you are part of our community, facing mental illness together.
Through membership you can get involved in our work in a variety of different ways, at a level that suits you. We’re excited to share this journey with you.
If you have any questions about your membership you can reach the team by email on membership@rethink.org or call 0121 522 7016 Monday to Friday 9:30am to 4:30pm.
Advocating for affordable prescriptions
Rethink Mental Illness has signed up to the Prescription Charges Coalition alongside 50 other organisations.
On the 1 May prescription charges rose by 25p, from £9.65 to £9.90. We continue to support a freeze on charges, and in late February we handed an open letter into the Department of Health and Social Care calling on the UK government to freeze prescription charges in 2024 and 2025. The latest Coalition survey shows that 1 in 10 people with long term conditions can’t afford their prescriptions, which is impacting their physical and mental health and making them rely on NHS services more.*
*Information is this artcle was sourced from the prescription charges coalition website. prescriptionchargescoalition.co.uk
Shaping the future of mental health research
In 2023, Rethink Mental Illness began a new area of work exploring opportunities to push for change around mental health clinical research (research with people to understand how well a particular treatment, for example, medicine, therapy or other intervention works). It is vital that our work is informed by the voice of lived experience so that we understand the barriers people face getting involved in mental health research and can advocate for changes that people who live with, or care for people who live with, mental ill health want to see. In spring 2024 we ran a survey that asked people about their views and experiences of mental health clinical research as well as current mental health treatment options. The survey was applicable for both people living with a mental health condition and carers to ensure that we captured a wide range of experiences and perspectives.
In the survey we asked if people would be happy to take part in future research opportunities (such as interviews or focus groups). If you did not have a chance to fill out the survey, but would be interested in taking part in future research, please contact membership@rethink.org.
for the diary Dates
Approaches to psychosis and other challenging mental states: International meeting in London 28 August – 1 September 2024
The 28th International Meeting on Dialogical and Reflective Approaches to Psychosis and other Challenging Mental States (IMDRAP) will take place at the University of London.
Friday 30th August is an Open Day for UK residents and others to learn more about Open Dialogue and meet the ODDESSI research trial teams. There will be discussions on a variety of issues related to dialogical teaching, practice and philosophy.
Contact us on membership@rethink.org to find out how to book your space.
GAMIAN-Europe art exhibition
6 – 20 September 2024
We’re delighted to be hosting at our office in London the GAMIAN-Europe art exhibition The Vibrant Mind –Embracing Mental Health Through Artistry. This exhibition has been featured at key venues across Europe during 2023/24 and showcases the artwork of individuals living with various mental health conditions. The aim of the project is to create visibility, encourage conversations around the connection between art and mental health, increase awareness and break down stigma.
Contact us on membership@rethink.org to find out how to book your free space.
Members’ Day
Saturday 16 November 2024
National Members’ Day is our bi-annual day for all members. The day includes inspiring talks from speakers across the mental health sector, information about our work as a charity and a space to meet and spend valuable time with other members.
The day will be held as a hybrid event this year at the Holiday Inn in Regent’s Park, London and online via Zoom. Keep an eye on your emails for more information.
Annual General Meeting
Thursday 21 November 2024
Our Annual General Meeting (AGM) is being held separately to Members’ Day this year. It will be a hybrid meeting. More details and the AGM papers will come in the autumn issue of Your Voice.
Pringle Awards
Now open!
Join us in celebrating excellence by submitting a nomination for a Pringle Award.
Our annual awards, named after our founder John Pringle, are an opportunity for us to highlight activity that is making a difference and helping achieve our mission of supporting people severely affected by mental illness.
This year we have awards for Group of the year, Service of the year, Supporter of the year and our two creative awards; art and poetry.
Art and poetry awards
These two awards are open to those who directly experience mental illness or the effects of it. You may submit your own art or poetry that you have created, or somebody else’s if you have their consent. This year’s theme is Understanding.
You can email or post your art or poetry to us, but please do not send us your original artwork, instead send a copy. We are unable to store original artwork in our office and do not want to lose or damage anything of value to you.
How to enter
Submitting a nomination is very straightforward: you can enter by email, post or phone. Just include details of your name, who you are nominating and for which award, and give a short explanation about why you think they should win.
Contact details
Get in contact with us at membership@rethink.org, call us on 0121 522 7016 or write to us at Membership, Freepost Rethink London. There’s no need to add a stamp. If you phone us and don’t get through please leave a message and we will call you back.
Winners & prizes
All nominees will receive a letter from Kathryn Tyson, Chair of our Board of Trustees. Winners will receive a certificate, £100 cash prize, and will be invited, with a guest, to Members’ Day on Saturday 16 November to be presented their award and trophy.
Please could you send all nominations, artwork or poetry to us by 10am on 16 September 2024.
Mental Health Unpaid Carers Charter
During Carers Week this June, we proudly launched our Mental Health Unpaid Carers Charter. Unpaid carers save society over £15.1 billion annually, yet their crucial support often comes at a significant personal cost. For the 1.5 million people in the UK caring for someone with mental ill health, the challenges are even greater, including dealing with difficult behaviours and facing stigma.
This Charter calls for recognising and supporting these unsung heroes, and ensuring a more compassionate and effective mental health care system.
You can view the full charter on our website: rethink.org/carerscharter
Our Carers Advisory Board has created a Charter with six key asks calling for carers to be:
1 2 3 4 5 6
Involved, listened to and treated respectfully by services.
Treated as partners in care by health and care professionals, who have received appropriate training to support this approach.
Offered full access to specialist carers support, including help to understand their rights.
Supported to avoid financial hardship while undertaking a caring role.
Understood and assisted according to their individual needs and backgrounds.
Assisted to plan for when they are not there, and for the future of the person they care for.
Florrie’s story
Florrie has been supporting her son through treatmentresistant paranoid schizophrenia for 20 years. Although her son has experienced multiple crises, Florrie cherishes the positive times and the comfort from family, friends and peers from a Rethink Mental Illness support group.
“Caring for someone with a severe and enduring mental illness is a bit like being on a rollercoaster ride. At times, days go past fairly smoothly and then suddenly it all falls to pieces and you are in crisis mode.
Initially I’m usually having to deal with the crisis on my own, as I’m the one who would need to alert his Community Psychiatric Nurse (CPN) or social worker, and even then it can be a while before anyone responds. Sometimes I feel very much that I’m coping on my own. Luckily, I have a very supportive family and friends who make all the difference to my own mental health and ability to cope.
My son has had a diagnosis of paranoid schizophrenia for over 20 years. He has been sectioned numerous times, both under section two and three, and he has also been in prison for seven months following an acute psychotic attack. In the last 18 months, he tried to take his own life whilst suffering from a psychotic episode. He is now treatment resistant.
When he is sectioned, it is a huge relief as for a while we don’t need to worry about how he is. He feels safe and secure in our local psychiatric hospital, and responds well to routine and regular meals. He also enjoys the company of staff and other patients.
One of the great difficulties my son lives with when he is home is loneliness. There is very little socially that he can access, and seeing his friends have careers, families and relationships is very difficult to come to terms with.
Being open is sometimes all it takes. “ ”
Caring for someone you love with a severe mental illness is not for the faint hearted! “
”
He does love music, and when he’s well enough he will compose drum and bass. He also gets a lot of comfort from the local church which is very welcoming. When he is well, we enjoy meeting for coffee or lunch and occasionally a walk in the country. By nature he is generous and loving. Thankfully this part of his personality is still there.
In the past, I ran a Rethink Mental Illness support group. The group was a mixture of talks by experts, e.g. psychiatrists, pharmacists, community psychiatric nurses (CPNs), and more informal meetings where we talked amongst ourselves, listened and exchanged
information. It was great meeting new people, sharing knowledge and experience. But like many groups it ran its course. Living in a semi-rural location, where there’s a small population and a lack of transport, makes it more difficult to sustain a viable group, but I am still in touch with a couple of people I met there.
Caring for someone you love with a severe mental illness is not for the faint hearted! But I have found that people are willing to share their experiences when they learn that you care for someone with a mental illness. Being open is sometimes all it takes."
How the NHS makes decisions around mental health A guide to
In 2022, Integrated Care Systems (ICSs) were set up. Now, they have an important role in making decisions about mental health care. This is your guide to understanding how they work and how you can get involved.
What is an Integrated Care System?
Integrated Care Systems, or ICSs, are partnerships that bring together all the healthcare providers in a particular geographical area. These health providers include the NHS, local authorities, and some other health providers, including Rethink Mental Illness if we provide services in the area. There are 42 ICSs in England, and you can find out which one you are in on the NHS website.
Each ICS has an Integrated Care Board, or ICB, which is responsible for managing the budget and making important decisions about how care should be delivered within the ICS.
What decisions do ICBs make and how do they make them?
ICBs do make decisions about spending and commissioning. This means they decide:
• How much of their budget should be spent on mental health.
• How much money goes to different types of mental health services.
• Whether a particular service is delivered by the NHS mental health trust, by a charity, or by a private company.
ICBs do not make decisions about:
• How much money the NHS has overall –this is decided by central government.
• Anything to do with secure mental health wards – this is managed separately.
• How social care should be delivered – this is decided by the local authority.
Independent care providers must follow NHS England and government rules but do have freedom. Collaborating with ICBs is crucial to improving mental health care. The exact decision-making process varies for ICBs, but each ICB must have a chair. You can find this information on the ICB website.
How
can I get involved with improving mental health care within my ICS?
Every ICB is required by law to involve patients and carers in decision-making. But it can be difficult to know where to start. While each ICB is different, here are a few suggestions about where to get started:
Organise with other people who have the same passions or concerns - Citizens UK have useful advice about how to do this.
Write to the chair of your ICB – each ICB is required by law to have a chair. You can find out who this is on your website.
Contact your local Healthwatch – Healthwatch champions the views of people with lived experience.
Look out for patient and care involvement groups – some ICBs or Trusts run groups you can join.
If you want to make a complaint about the care you have received as an individual, see the advice on our website.
Top tips:
How to have an influence
Maybe you’ve decided to email your ICB chair, or maybe you’ve been invited to attend a board meeting. How can you make sure you have the biggest impact possible?
Be solutions-focused think about what you’d like to see in local mental health services, and how it might work.
Don’t be afraid to ask ‘obvious’ questions, they might not be obvious to other people in the room!
Bring examples of best practice from other areasyou can find examples at rethink.org.
Say something if people are using jargon or acronyms that you don’t understand, the NHS should use language that is accessible to everyone.
Get in touch with us
Get in touch with us for more advice at CMHFsupport@rethink.org.
Person-centred support that makes an
impact
Our Plymouth Community Mental Health Service in Devon has been providing alternative and inclusive support for people experiencing severe mental illness for nearly 15 years now.
The service focuses on the individual and how they would like to access support, as well as helping them achieve their goals and improve their overall wellbeing. If someone has complex needs they will be given guidance to ensure they access the most appropriate support for them.
The service hosts a variety of support groups across Plymouth, and works alongside other organisations to access wider support in the area. This approach supports referral assessments and ‘warm handovers’ to ensure individuals aren’t shifted between services without getting the right support.
The staff are extremely passionate and proud of the work they do, as well as the guidance provided by the service and the results it sees.
It’s given me more confidence to attend things that I would not have been able to do alone. “ ” Service user
Responses from our Plymouth Community Mental Health Service user experience survey for the past 12 months shows that:
84% of respondents feel less socially isolated.
92% said the service has had a positive impact on their mental health.
90% say the service has had a positive impact on their confidence and self-esteem.
Finding and attending social groups has really helped me become more confident and do things with people I haven’t met before. “ ” Service user
“We support people experiencing severe mental illness to make invaluable changes to their lives, enabling a better quality of life and access to a range of opportunities such as education or voluntary work. We support people to build relationships and confidence, and ensure they feel part of something by attending group activities.”
Clare Evans, Service Manager
“One of my favourite aspects of the role is witnessing the improvements to an individual’s quality of life, watching them grow, and seeing them access their full potential through their own hard work. Client journeys can encompass many ups and downs and challenging moments, but my favourite part of my role is when a client overcomes these moments and discovers their own strength and determination.”
Emily, Support Worker
I’m
extremely proud of my Board. We bring together all our different experiences in a way that really benefits decision-making for the charity.
We met with our Chair of Trustees, Kathryn Tyson, to find out more about her and the work of our board:
What
drew you to Rethink Mental Illness?
As Head of Mental Health Policy at the then Department of Health, I met a lot of really passionate, committed, interesting people in the mental health field, and that included mental health charities. I was in post as the first findings from the UK roll-out of early intervention on first-episode psychosis were coming through – an exciting time to be involved. So, when it came to early retirement, I looked around for a place to offer my services and Rethink Mental Illness put up its hand.
Can you tell us a bit about your career with the Department of Health?
I was there for 34 years, working as senior policy advisor to a lot of different ministers on a number of different health topics. I did a stint in child health which included Children and Adolescent Mental Health Service (CAMHS). My last job there was a global health position which gave me a taste for international travel!
What parts of the role do you find particularly rewarding?
I always enjoy my visits to services, and any opportunity I have to interact with staff and service users is always great. I also like the sense I get at the end of board meetings that we had a lot of complex and difficult things to discuss, we got through them all, everyone has had their say and that I have guided people towards some good decisions.
I’m extremely proud of my board. It’s a mixed board – one half of our trustees have been co-opted for particular skills and the other half are experts by experience. We manage to bring together all our different experiences and points of view in a way that really benefits decision-making at the charity. That makes me very proud.
Why is membership so important to the charity?
Membership is an opportunity for some of our closest supporters to stay involved and informed of all the different things we do across the organisation, over many years. It’s a fantastic way for our supporters to demonstrate the value they attach to our work.
What role do members play in influencing our governance?
Our members play an important role in the structure and governance of Rethink Mental Illness. Members can apply to sit on our regional boards and influence our priorities locally. They can also vote for or against governance proposals, ask questions about priorities and the strategic direction of the charity and have a vote on candidates to the Board of Trustees.
How can members become more involved with, and influence, the strategic direction of the charity?
There are often voluntary opportunities available in a member’s local area - that is a good starting point. Our governance structure means it’s possible as a member to apply to sit on a regional board, or on one our advisory boards, which are made up of carers or people with lived experience. Vacancies are advertised in this magazine or through our email newsletter and social media channels. Our work and priorities are strongly influenced by the learnings and knowledge of people with lived experience so we are always keen to involve members where we can.
Can you think of a recent example of when members have influenced change at the charity?
In 2022 members voted for the proposal at our AGM to change our legal name from the National Schizophrenia Fellowship to Rethink Mental Illness. As this has been our trading name for a number of years already the public were already familiar with it, and it better reflects the wide range of our beneficiaries.
You can read more about the people who make up our board by visiting rethink.org/ aboutus/who-we-are/people-andgovernance/
Trustees play a vital, usually unpaid, role in the charity sector. They ensure a charity complies with the law, is well run, and (if applicable) accountable to its members. Trustees are responsible for the charity’s financial sustainability, compliance with financial laws, and ensuring all activities and funds further the charity’s aims.
John Hall Wellness Garden has blossomed!
John Hall Wellness Garden, a Rethink service in Leek, Staffordshire and current winners of our Service of the Year award now has a new classroom and café thanks to a grant from the Severn Trent Community Fund, part of Severn Trent water.
This grant has helped improve the facilities and service profiles, and to create employment opportunities. The brand new classroom hosts local initiatives which reduce isolation and support social connections within the community.
In addition, a community café has been established. This supports service users with developing employment skills and has helped to root the garden as a wellbeing hub for the whole community.
A Lasting Legacy of Support
Honoring Raymond Briggs
We are honoured to share that we are one of three charities left a gift in the Will of beloved author and illustrator Raymond Briggs CBE, a lifetime member of our charity.
Briggs, who died in 2022, was best known for classic children’s books such as ‘Father Christmas’, ‘Fungus the Bogeyman’ and ‘The Snowman’. He also wrote graphic novels for adults, like ‘Ethel & Ernest’ and ‘Time for Lights Out’. His books have sold over 8.5 million copies worldwide in 24 languages, with many successfully adapted for the screen.
His connection to our cause dates back to the early seventies, coinciding with when we were founded as the National Schizophrenia Fellowship. Briggs’ wife, Jean Taprell Clarke, lived with schizophrenia and references to the challenges of those times can be found in the pages of Raymond’s work.
Jean, also a talented artist, sadly died in 1973 of leukemia (a form of blood cancer), but Raymond’s connection to our cause remained strong, and he became a lifetime member in 1991.
The work of Raymond Briggs is instantly recognisable and treasured by us all, and we are honoured to be part of his legacy.
“ ”
Mark
Winstanley, Chief Executive of Rethink Mental Illness
Fellow charities Blood Cancer UK and Parkinson’s UK will also benefit from Briggs’ legacy.
Creative Voice
We’re pleased to share the poems from the three winners of our annual Ellie J. Shakerley Poetry Competition, inspired this year by a painting by Finn Clark whose artwork inspires The InFinnity Project. The winners have also each received a cash prize for their peer support group.
Descent by Sarah Gogan
Resting on the sofa I glimpse my daughter, Head up, pondering the stars. Contented in the moonlit courtyard, Kitty at her feet.
What does she see?
The Giant falling to Jack? Rapunzel shorn and tumbling from the tower; Or Sleeping Beauty spiralling down, Awakening to her newly-kissed life? Do fairytales fill her head?
Perhaps, as she stands firm and strident, An angel glides from the crescent moon, immersing her in buttery wings, Soothing fears of what’s to come: Other descents, in other futures.
Sarah, Treasurer of the Rethink Carers of Psychosis Experiencers Group (COPE) in Newton Abbot, Devon, told us “I wrote my poem from the perspective of a mother looking out at her child on the balcony and imagining her future. I was thinking of my loved one who experiences psychosis and remembering when I imagined their future and the general worries I had.”
But, here in the peace and quiet I look up and see her ascend.
Questions and Answers
by Jonathan Wells
What should I make of my world? Is it a friend or a foe?
When I lie in my bed snugly curled I long for some people to know.
I’m alone, I’m exposed, and I’m small, The buildings around me are high. They bring me no comfort at all And block out the light from the sky.
The windows up there are so bright
Like searchlights they stare from above. They cannot relate to my plight
Nothing can offer me love.
I don’t love myself, I’m depressed I alienate people and groan. No humour or joy is expressed As I hide and make sure I’m alone.
My hopes lie in somewhere out there. If I could accept and embrace. A benevolent creature so fair I’d instantly show them my face.
I half-see this angel above me I watch as she gently looks down. It seems like she never will love me I ask should I smile or frown?
Life beckons. I long to be part of it! I’ll jump and fly into the heart of it!
Jonathan is the Group Coordinator for Rethink Carer Support: Cambridgeshire and Peterborough. He said his poem was initially his reaction to the image, but became more personal to reflect his experience of depression.
Angel of Suburbia 1983 by Eleanor Cantor
You might not think of “swagger” when you think of angels but of grace and holy stuff: unearthly eery things
but that Angel who came to my terrace that night as big and as golden as Shwedagon temple and made my parents shut up and blew up the school and took me to see the stars and made stars ask for my autograph and when I showed him my scars said: “what scars?” and shrugged for me the smooth skin of a teenage seal and before he left placed his giant palms on my shoulders – two big yellow California suns and said that what was definitely WILL NOT ever shall be
That angel – he had swagger and I’ve been flying on it soaring ever since.
Eleanor, a member of the Sheffield OCD Support Group said "Studying Finnian’s painting, I was at a loss at first, but as soon as I put myself in the child’s place the words came flowing. Looking at the painting now, I can almost think I remember that night, on the terrace, in 1983..."
If you are curious about what peer support groups we have in your area please email the team on groups@rethink.org who will be happy to advise you.
Do you enjoy painting, drawing or writing poetry to help manage your mental health?
Email your submissions to membership@rethink.org or you can post them to: Membership, Rethink Mental Illness, 28 Albert Embankment, London, SE1 7GR
