The inaugural HSJ Patient Leaders recognises 50 outstanding individuals whose personal experiences have led them to instigate change and as a result are shaping healthcare
The inaugural Patient Leaders
Patient leader and coach
Oli is a firm fixture on social media: his Twitter profile (@OliJAnderson) has 58,000 followers and he also runs a popular blog. His musings - which are often drawn from his study of philosophy - give an insight into how he lives with renal disease. He regularly provides coaching to others with chronic conditions and is committed to helping healthcare professionals understand what it is like to be a patient. Said one of those nominating him: “He is
Judges’ comments: “He’s doing very good work.”
Founder, Cure the NHS
Having witnessed the care her dying mother received on the wards of Stafford General Hospital, Julie founded the campaign group Cure the NHS. The organisation was to play an important role in securing a full public inquiry into the standards of care at Mid Staffordshire Foundation Trust. She continues to be a prominent and important patient leader, supporting and advising others who experience poor care.
Judges’ comments: “Clearly demonstrates the courage of a leader.”
Chief executive, Spinal Patient Integrated Network (SPINE)
Kevan was a 19-year-old university student when a car crash left him paralysed from the waist down. After treatment and recuperation at Pinderfields Hospital in Yorkshire, he went on to represent Great Britain in four Paralympic Games – winning medals at two of them. He continues to receive care at Pinderfields and, in his role as chief executive of local support group SPINE, is a powerful advocate for fellow patients.
Said one of those nominating him: “He is an integral and respected member of the team and has empowered patients through access to peer support, advocacy and legal advice, ensuring emotional and practical support complements physical recovery. Under Kevan’s leadership, SPINE has introduced activities ranging from highly competitive wheelchair rugby to arts sessions.” His impact extends to the national level too, as a member of the Spinal Cord Injury Clinical Reference Group.
Judges’ comments: “He is clearly using his patient experience to make a real difference.”
Service user/carer representative, Mersey Care Trust
From the age of four until her late teens, Iris endured severe physical, mental and emotional torture. When her awful experiences led her to seek help from mental health services, she found that the occasional use of physical restraint by staff caused her to relive her abuse.
By having the courage to share her story, Iris has been central to the creation of Mersey Care Trust’s No Force First initiative. The aim of the programme is for physical and medication-led restraint to become an absolute last resort. Audit shows the instances of such restraint have fallen since the programme’s introduction. It is now being taken forward at the national level.
Judges’ comments: “Some of the wards at the trust have stopped physically or chemically restraining patients, and it’s largely because Iris shared her story.”
Poet and patient leader
Adam is sadly no longer with us: the 15-year-old, who was born with cerebral palsy, died in March. But our judges were absolutely clear that the incredible influence this young man had over the course of his short life deserved recognition in this supplement.
Adam was paralysed, but communicated through blinking. He wrote award-winning poems and latterly became a hugely popular presence on Twitter. In 2014, he was asked by NHS Confederation chief executive Rob Webster to pen a poem on healthcare leadership, the words of which have been widely shared.
Said one of those nominating him: “Adam highlighted the need for NHS leaders to care and helped leaders to rethink their behaviours and attitudes to delivering services. His legacy lives on through improved care processes across health and social care.”
Judges’ comments: “Adam is definitely on the list. He deserves the spotlight.”
Founder and chief executive, National Rheumatoid Arthritis Society (NRAS)
Ailsa has lived with severe rheumatoid arthritis (RA) for more than three decades and, in 2001, founded NRAS to support others with the condition. The organisation remains the only UK charity dedicated specifically to the disorder and is said to have had a significant impact.
“Ailsa and her team have raised the profile of RA and she has contributed in a major way to NICE guidelines, technology appraisals and quality standards,” reported one of those nominating her. The organisation’s reach grows: it is now being directly commissioned to provide supported self management services.
Judges’ comments: “She is clearly bringing her experience with RA to work with organisations to deliver new models of care.”
Patient and staff champion, Barking, Havering and Redbridge University Hospitals Trust
Said one of those nominating Ashley: “He is an inspiration and joy to be around. He must make the list.” Our judges agreed. In 2001, Ashley was diagnosed with leukaemia and, during treatment, contracted life threatening MRSA.
After recovery, he launched a hand hygiene campaign subsequently endorsed by the then chief nursing officer. He was subsequently appointed national patient champion by the Department of Health. At Barking, Havering and Redbridge he created and leads the Guardian Service, whereby staff can approach him to raise any concerns, including around patient safety.
Judges’ comments: “He’s very powerful, and has worked across the NHS on a range of projects. His involvement in the Future Focused Finance programme has ensured the patient voice is part of the discussion about NHS finances.”
Mental health patient leader and champion
In February, Ian was named as one of Nick Clegg’s Mental Health Heroes. To that award, he now adds the accolade of HSJ Patient Leader. A former user of secure mental health services, Ian was one of the patient representatives on the Berwick review into patient safety.
Through his involvement in a Department of Health project on secure mental healthcare, meanwhile, he helped set up a network of nine regional recovery and outcomes groups. The groups meet quarterly to bring together patients, staff managers and the commissioners of secure care and to share best practice.
Judges’ comments: “He has championed the voice of mental health service users.”
Alison is a well known patient leader, and a determined one. As one of those nominating her put it: “Her honesty, integrity and refusal to accept being put into a box and wheeled out to suit those who see patient leadership as an add-on option is stunning to see.”
While working in international development, an accident led to the deaths of Alison’s colleagues and ultimately to a diagnosis of post-traumatic stress disorder.
She resolved to use her experiences of care to help others, and recently became the first patient to graduate from the NHS Leadership Academy with a postgraduate qualification in healthcare leadership.
Judges’ comments: “She was the patient leader on the School for Health and Care Radicals programme and was very, very effective on that.”
Co-chair, East of England Citizens’ Senate
Fiona, we were told by one of those nominating her, “makes everybody sit up and listen”. A renal cancer patient since 2001, she is - among other things - a founding member of the Coalition for Collaborative Care, and has been involved in the development of NHS Citizen since its inception.
“With spiky red hair and a shiny green wheelchair, there is no mistaking her impact as soon as she enters the room,” said one nominator. “But it is her eloquence on the subject of true patient partnerships that really stops people in their tracks.”
Judges’ comments: “She should definitely be on the list.”
Catherine Carter and Shaun Webster
Parent supporter (Carter), and Rights of Children Europe worker (Webster), CHANGE
Co-production has become a watchword of the NHS in recent years, but Leeds-based charity CHANGE has been practising it for two decades. The organisation is led by those for which it campaigns: people with learning disabilities. Employees are paired with colleagues without learning difficulties, and together they co-lead projects.
Catherine has been at the organisation for five years and, as a parent with a learning disability, is helping support others in the same position. Shaun also has a learning disability, and is a co-worker on a project to help ensure children in Eastern Europe are cared for in the community rather than in institutions.
Judges’ comments: “CHANGE is defining a real role for people with learning disabilities in healthcare, and Catherine and Shaun are very active in that. They are both inspirational.”
Co-founder, Our Diabetes
David felt there was a need for fellow sufferers of type 1 diabetes to have an independent, member-led community - so he helped found one.
Our Diabetes uses tweet chats to share resources, ideas, experiences and opinions. David may be surprised to see himself on this list since one of those who nominated him reported that “he would never see himself as a leader”. But there is little doubt that he is an important one, not least through his recent representation of the diabetes community at a parliamentary outreach event.
Judges’ comments: “He founded Our Diabetes to help others, based on his own experience.”
Founder, We Love Life
Another of our Patient Leaders whose work has been influenced by living with type 1 diabetes, Roz founded social enterprise We Love Life in 2014.
The aim is to explore how citizenship and digital health can improve wellbeing. Projects have included a digital self care toolkit to help people live well with diabetes. Said one of those nominating her: “Her innovative use of media means Roz gets to real people quickly.”
Judges’ comments: “She is very innovative; very creative in her ways of working.”
Anya de Longh
Patient leader and self management coach
Already named one of our Rising Stars, the judging panel was clear that Anya should also be selected as one of our Patient Leaders. A former medical student, she was forced to end her studies following a diagnosis of several long term neurological conditions.
She is keen to emphasise the important role patients can play in shaping care: “Although the knowledge and skills and expertise I’ve learnt as a patient means I don’t have half the alphabet after my name, it’s not to say it’s any less valuable than the experience people gain from a clinical or professional background,” she argues.
Judges’ comments: “She’s exactly the sort of person we need to recognise.”
Co-founder, Centre for Patient Leadership
No recognition of patient leaders can be credible without the inclusion of Mark. As co-founder of the Centre for Patient Leadership - with fellow HSJ Patient Leader David Gilbert - he is seen by many as originating the idea of patient leaders.
Diagnosed with rheumatoid arthritis in his mid-20s, David has said he “had to find a way out of a depressive cycle of hopelessness and helplessness. Self management techniques helped, but self leadership was key.”
More than 500 people have been through the development programmes at the Centre for Patient Leadership, and Mark has recently been appointed an associate at The King’s Fund.
Judges’ comments: “On the list. No doubt.”
In 2011, Irenie was diagnosed with the rare corneal infection acanthamoeba keratitis. The consequences were significant: she has had two corneal transplants and lost the sight in her right eye. Her experience has led her to raise awareness of the condition and, specifically, the biggest risk factor for it - contact lenses coming into contact with water.
In 2013, she persuaded the British Contact Lens Association to print stickers for contact lens packaging featuring a warning graphic she designed. This has prompted a major lens manufacturer to fund a study with Moorfields Eye Hospital on the “no water” message.
Judges’ comments: “She seems to be trying to challenge the system, and that is definitely worthy of recognition.”
Non-executive lay member for patient engagement, Newham CCG
Newham is an area with many diverse communities, with over 200 languages and dialogues spoken. A long time human rights campaigner, particularly on migrant rights, Wayne is said to be determined to ensure equal access to healthcare services for all.
In his role at the CCG, he has coordinated an exercise on prescription scheme through which a local coalition of community providers have offered everything from Zumba to classes on healthy eating.
Judges’ comments: “His work has helped engage a lot of people from diverse communities.”
Co-chair, East of England Citizens’ Senate
Trevor joins his fellow chair at the East of England Citizens’ Senate, Fiona Carey, as a member of our inaugural collection of patient leaders.
A cardiac patient, Trevor is an advocate for the British Heart Foundation and patient representative for the complex and invasive cardiac clinical reference group. He has also served as a lay assessor for the Keogh review and is a patient representative for Care Quality Commission inspections.
Judges’ comments: “He is doing really good work.”
Co-founder and director, Peoplehub
Jo’s son Mitchell was one of the first people in England to have a personal health budget. Mitchell was born with a severe disability and complex health needs, but was able to lead a full life at home - in large part, his mother says, because of the increased flexibility and control afforded by his personal health budget.
She founded community interest company Peoplehub to share her experiences, and to give a voice to people who have - or who want - a personal health budget. Sadly, Mitchell died in April, but in a moving blog post on the NHS England website - she leads its national personal health budget peer network - Jo says she is determined to continue her work as a patient and carer champion.
Judges’ comments: “Setting up an organisation to support people with personalised health budgets so they can be independent in their own homes is an important piece of work.”
Member, Royal College of Paediatrics and Child Health Youth Advisory Panel
“An outstanding young man and a bright leading light in patient leadership,” said one of those nominating Thines.
Diagnosed with osteogenesis imperfecta (brittle bone disease) at the age of two, Thines has been a regular user of services throughout his life and is keen to share his experiences to improve care. He jointly runs the NHS Citizen young people’s discussions and has been a guest lecturer at King’s College and at Greenwich University, speaking to paediatric nurses.
Judges’ comments: “He is a young patient leader, and that deserves recognition in itself.”
Dr Kate Granger
Consultant in elderly medicine, Mid Yorkshire Hospitals Trust
There are few whose leadership has been shaped as much by their experience of care as Dr Kate Granger. Diagnosed with a rare and incurable cancer in 2011, Kate quickly became concerned by how few of the clinicians who treated her introduced themselves. In response, she launched the #hellomynameiscampaign on Twitter and it is difficult to overstate its impact - and hers.
It is an appeal to go back to the basics of compassion, and one that has been embraced by 90 healthcare organisations and, recently, the Scottish government.
Judges’ comments: “Simply has to be a yes.”
Renal patient leader
Jonathon has been a kidney patient for 35 years and, in recent years, has become an active patient leader and advocate. From 2003 to 2007, he was the co-chair of a kidney modernisation initiative that helped redesign services in south east London to better meet patients’ needs.
He firmly believes in the value of self management, and has recently been appointed co-chair to a national programme exploring self management support for people with long term conditions.
Judges’ comments: “He has had kidney disease for a long time, and has definitely brought that experience to bear in quite a nuanced, subtle way.”
Co-founder, Centre for Patient Leadership, and patient director, Sussex MSK Partnership
David joins his fellow Centre for Patient Leadership co-founder Mark Doughty as one of HSJ’s Patient Leaders. As one of those nominating him put it: “He patiently and professionally tries to ensure everyone thinks of health from a user perspective and [he] works well with patients, clinicians and managers alike.”
Or, in the words of one of our judges: “We owe Mark and David a great debt. I would bet that many of the other patient leaders we have selected have come through Mark and David’s hands.” David’s influence shows no signs of abating: he has recently been appointed patient director at Sussex MSK Partnership.
Judges’ comments: “He uses his experience as a mental health patient to very good effect.”
Ambassador, Alzheimer’s Society
“Ken Howard is an astonishing role model for people living with dementia,” said one of those nominating him. Consider his achievements and it is very difficult to disagree. Diagnosed with Alzheimer’s disease eight years ago in his mid-50s, Ken initially regarded it as a mental death sentence. He now shares the message that a dementia diagnosis does not instantly end your life and your aspirations.
Said a nominator: “He enables a range of health professionals, carers and members of the public to understand how to support people living with dementia in a way that encourages quality of life and independence. He breaks every stereotype and eradicates stigma in a way that ‘standard’ books and courses fail to do.”
Judges’ comments: “A definite yes.”
Freelance mental health educator
In 2005, when service user Derry was part of a recovery steering group in Wirral, she heard about lots of projects which could be of value to those with mental ill health or drug and alcohol problems. The problem as she saw it was that there was no one place listing all these activities.
So she set up the Recovery Wirral website, featuring information about local initiatives that could be helpful - from debt education to therapy to food banks. More recently she has taken over the chair position at the Wirral Mental Health Forum. “Her love and commitment to support people with mental health difficulties is admirable,” said one of those nominating her.
Judges’ comments: “It’s people like her doing things locally who make a really big difference.”
HELLP syndrome campaigner and patient leader
In February 2014, Leigh was looking forward to the birth of her long awaited first baby. Hugo’s due date had been in June, but Leigh developed life threatening severe pre-eclampsia and the related condition HELLP syndrome.
There was no choice but for her son to be delivered immediately and, sadly, Hugo died when he was 35 days old. Since then, Leigh has dedicated herself to sharing her experiences to help improve care. A communications professional, she has established Bright in Mind and Spirit to raise healthcare professionals’ awareness of the importance of effective communication with patients. She has already redrafted some of the material used at the neonatal unit that cared for Hugo.
Judges’ comments: “She is improving care for future patients by talking to healthcare professionals about her experience.”
Patient voice, London Clinical Senate
One of those nominating her described Nicola as a trailblazer. Her patient leadership has been inspired by her son, who developed type 1 diabetes at just 18 months. The two parent support groups she set up for Diabetes UK help others in her position, and she also successfully campaigned for the appointment of a diabetes specialist nurse at Guy’s and St Thomas’ Foundation Trust.
Judges’ comments: “Uses the experience of her family to try to drive strategic change.”
Andy brings his experience as both a patient and a carer to his leadership. As someone who has lived with type 1 diabetes for most of his life, he is an expert member of the West Cheshire Clinical Commissioning Group diabetic commissioning group. His work there has contributed to changes in local services at the Countess of Chester Foundation Trust.
As a carer during the final few months of his father’s life, meanwhile, he has influenced end of life pathways. He filmed his dad talking about the experience of end of life care and, after he showed the video to the CCG, it took the decision to review local services.
Judges’ comments: “The video was incredibly powerful, and has had a clear impact.”
Academic in health informatics and patient champion
With a PhD in health informatics, Howard is a strong believer in the value of sharing information and giving patients access to their records. He is also passionately committed to making that information accessible, drawing on his own experiences as a deaf-blind individual. He is currently sharing his expertise as a member of the NHS England advisory group on accessible information.
Judges’ comments: “He campaigns tirelessly around access issues, particularly communication. He’s just the most amazingly humbling person to work with.”
Renal patient champion
As director of The Kidney Alliance, Fiona headed an organisation aiming “to promote high quality treatment for all patients with kidney failure”. She is a patient herself, having received a transplant in 2006 following five years on dialysis. Her influence is widespread: she is co-chair of the NHS England and UK Renal Registry project on acute kidney injury, and policy director of charity the British Kidney Patient Association.
Judges’ comments: “She definitely brings a powerful patient perspective and influences people’s thinking.”
In 2014, at the age of 58, Wendy was diagnosed with Alzheimer’s disease. She has since dedicated herself to encouraging others with the condition to actively participate in research. One of those nominating Wendy suggested that the successful launch of the Join Dementia Research website owed a great deal to her efforts - she was the media face of the project for much of the day.
She has also supported the development of a network of patient and carer champions to drive the initiative, and regularly speaks about her experiences at conferences across the country.
Judges’ comments: “She is doing very good work.”
Board member, Healthwatch Lincolnshire
Pauline cared for her husband Gordon, a heart failure patient, for 12 years up until his death in 2008. Together they founded HOPE (Hearts of Positive Energy), a local support network for fellow patients and carers. She then spent three years as chair of the Lincolnshire Carers Partnership, representing carers both locally and nationally. Awarded an MBE for services to carers in 2013, she now becomes an HSJ Patient Leader.
Judges’ comments: “She has done national work around carers’ policy, which is incredibly important.”
Lay member, patient experience strategy group, Oxford Academic Health Science Network
Carol is a former nurse who is committed to making the patient voice heard in healthcare. Said one of those nominating her: “Carol inspires, she challenges. People listen to her and she gets things done.” One of those things was the creation of a Dementia Handbook for Carers, used in Berkshire.
The project drew on her own experience of looking after her mother, who was diagnosed with vascular dementia in 2008 and died in 2012. As patient leader for the Thames Valley and Milton Keynes Patient Experience Strategy Group, she is “pushing it to work differently - acronyms banned, new pieces of work developed with patients from the beginning.”
Judges’ comments: “She’s very active. And the handbook is important - it’s had results.”
Patient safety campaigner
Josephine became a patient safety campaigner following the death of her daughter, which she believes was due to medical negligence. She initially became involved with the patient and public involvement group at the hospital which had cared for her daughter, but her influence has since grown.
After a period as a senior researcher at The King’s Fund, working on the Patient and Family Centred Care programme, she took up the role of chair of the Patient Safety Champion Network at Imperial College Health Partners. Said one of those nominating her: “She is an inspiration to many people experiencing the results of serious harm in the health and care system.”
Judges’ comments: “A definite yes.”
Chair, National Co-production Advisory Group (NCAG) at Think Local Act Personal
Sally’s belief in the importance of co-production of services stems from her experiences as mother to a child with disabilities and carer for her mother, who has dementia. As chair of NCAG, she helped write Making It Real - a set of “I” statements that set out what the experience of care should be like. These have since been adopted by more than 800 organisations.
Judges’ comments: “The organisation has had huge impact in bringing together health and social care.”
Young member, East and North Hertfordshire Trust
Many adults would get anxious at the prospect of presenting their ideas at an annual general meeting, which makes 15-year-old Hannah’s achievements all the more impressive. She stood up in front of 400 delegates to present her SPEAK campaign, designed to improve communication between clinicians and young people.
A popular video helps explain the rationale behind the project: the idea that, as a young person, visiting hospital can be very intimidating and that clinicians need to bear that in mind when speaking to younger patients. She has already received national attention through being shortlisted for the NHS Innovation Challenge in December 2014, and now takes her place as the youngest member of HSJ’s Patient Leaders.
Judges’ comments: “What she’s done by the age of 15 is very impressive.”
Mental health campaigner
In October 2013, Lisa Rodrigues contributed an article to the HSJ website. In it, the then chief executive of Sussex Partnership Foundation Trust opened up about her personal experience of mental ill health. The piece became one of the most read and shared articles on our website that year.
Since retiring last year, Lisa has become a prominent opponent of the stigma that still exists around mental illness. She is an ambassador for the national Time to Change campaign, and writes and speaks widely.
Judges’ comments: “She has been gutsy in talking about her personal experience, and found ways of being a fantastic advocate based on it.”
Mental health champion
Tony’s patient leadership has taken him all the way to the nation’s seat of power: he runs mental health awareness training for members of Parliament. It is just one strand in his work to raise the profile of mental illness and support fellow patients. With his wife Angie, Tony has put together a collaborative of 54 mental health organisations. One of those nominating him reported: “I truly believe that he has been instrumental in driving mental health up the political agenda.”
Judges’ comments: “He has to be in: he is very effective in his work.”
Michael has Crohn’s disease, which led to a bowel transplant, and is now receiving treatment for lymphoma - of which transplant patients are at increased risk. He remains an active patient champion and campaigner despite his continuing health challenges.
With a strong presence on social media, his popular Daily Patient newsletter brings together information on topics affecting patients. Meanwhile his invention of a sensor which clips on to any ostomy bag and alerts when it’s full saw him recognised as an HSJ Top Innovator last year.
Judges’ comments: “He is very, very active as patient leader and campaigner, and he’s doing it all by himself rather than as part of an organisation.”
Patient leader in mental health, West Cheshire CCG
Julie has been a lived experience adviser for Cheshire and Wirral Partnership Foundation Trust since 2009. Now she is an employee there too - she became a newly qualified mental health nurse last year. Julie is said to have had a “massive impact” on the development of mental health provision locally, helping obtain funding from the CCG for a programme of recovery work including tai chi, mindfulness and cookery. In 2014, our sister title Nursing Times named her care maker of the year at their student awards. Now she becomes an HSJ Patient Leader as well.
Judges’ comments: “It’s great that she’s become a mental health nurse as part of her involvement in this.”
Diabetes patient advocate
Alex was the first ever president of the International Diabetes Federation’s Young Leaders in Diabetes programme. In this role, Alex - who was diagnosed with type 1 diabetes at 18 months - led 70 fellow young adults from 48 countries in delivering projects to support those with diabetes.
His profile has grown rapidly, not least on social media where - as part of NHS Change Day - he launched #HelloOURaimis, inspired by the #hellomynameis campaign founded by fellow HSJ Patient Leader Kate Granger. The idea is for patients to name the single most important aim they wish to achieve. His national influence is only set to grow, following his appointment in December as patient experience and equalities manager of the CWHHE Collaborative in north west London (Central London, West London, Hounslow, Hammersmith and Fulham, and Ealing CCGs).
Judges’ comments: “A really young, dynamic health champion. He’s brilliant.”
Patient representative, NHS Thames Valley Patient Experience Strategy Group
Mark had spent 10 years working on various IT projects across health and social care when, in 2012, he was diagnosed with the degenerative condition motor neurone disease (MND). He continues freelance work, but now is also an active patient champion. A trustee of the MND Association, he is on the steering committee of the MND Care and Research Centre at Oxford’s John Radcliffe Hospital, as well as on the NHS Thames Valley Patient Experience Strategy Group.
Judges’ comments: “He is very matter of fact about his condition and its prognosis, and uses the logical approach from his career in his patient leadership work.”
Patient and public participation lead, East of England Strategic Clinical Networks
When our judges were reviewing those nominated for HSJ Patient Leaders, they were struck by the number hailing from the East of England. According to one of those who nominated her, Justine is an important reason why the area is so rich in patient leadership. After a cancer diagnosis, Justine founded an online support group for people in the same position. She then volunteered with the Anglia Cancer Network, in due course accepting a paid role in which she recruited and supported over 100 patients as active partners.
Judges’ comments: “She is dynamic and inspirational.”
Patient safety adviser, Care Quality Commission
James’ patient leadership story starts in a very sad place: the death of his baby son Joshua, after hospital staff failed to spot signs of the nine-day-old’s deteriorating condition. James campaigned for an inquiry into the care at Morecambe Bay Hospital, and his calm yet determined approach quickly brought widespread respect. As patient safety adviser for the Care Quality Commission, his influence is now national.
Judges’ comments: “From campaigning for a Morecambe Bay inquiry following the tragic death of his baby son, he now has the ear of the health secretary and NHS England.”
Young patient leader
In his mid-20s, Kiatipat is determined to ensure that healthcare professionals address the needs of fellow young people with disabilities. For the past year, he has been working with NHS England to advise on this area, and also has strong connections with the Department for Education. His central belief: young people with disabilities should be involved in their own education and health and care plans.
Judges’ comments: “He has had impact through a range of forums.”
Peer support development lead, Nottinghamshire Healthcare Foundation Trust
“Emma continues to draw on her own experiences of mental health problems in all of her work in a very real and authentic way,” argued one of those nominating her. During her time as a peer support worker - and now development lead - she has published and presented widely on the concept of peer support. Essentially, it is simple: she uses her own experience to help others. Surely the definition of a patient leader.
Judges’ comments: “She’s done a great deal.”
Ambassador, Together for Short Lives
Lucy describes herself as “writing and speaking for those without a voice”. She was born with Ehlers-Danlos syndrome, a life limiting disorder which has left her disabled since the age of 14. She is now largely bed bound, yet continues to speak about her experiences in the hope of helping others. She is a regular on social media and, when able to get into her wheelchair, often talks about her experiences - in November 2013, as a Young Avenger on Together for Short Lives’ Transition Taskforce, she presented to a group of MPs. She has recently become a global youth ambassador for the International Children’s Palliative Care Network.
Judges’ comments: “The work she’s doing is very good.”
Tommy used to travel the globe running global merchandising for the likes of The Spice Girls, Kylie Minogue and U2. Today he is still on tour, though a very different one. He now travels to share his experience of the six years he spent caring for his mother, Joan, who had vascular dementia.
His moving presentations to healthcare professionals - first in his home country of Scotland but now south of the border too - are changing understandings and perceptions. Based on his work, the Scottish government is funding Dementia Carer Voices, a project to highlight the importance of a person-centred approach to dementia care, with carers as equal partners.
Judges’ comments: “Should definitely be on the list.”
Chair, National Association of Patient Participation Groups
“Has the patient voice running through her work like a stick of Blackpool rock,” said one of those who nominated Patricia. During her time as chair of the Patients Association, Patricia led the campaign to end mixed sex wards. Lately, she has been promoting and supporting patient participation in primary care through her position at NAPP. She is said to be a “challenging, compassionate and quietly determined patient champion” whose background as a social scientist informs her approach.
Judges’ comments: “Patricia has done a huge amount. She’s a patient with her own problems, but has been very prepared to take some quite controversial lines in patients’ interest. We need people like that.”
Mental health trainer and speaker
James was in his late teens and an officer cadet at the Royal Military Academy in Sandhurst when he was diagnosed with schizophrenia. A mental health service user for more than three decades, during the past 10 years he has spoken about his experiences at conferences and trained healthcare professionals in recovery-based methods. He is heavily involved in the Implementing Recovery Through Organisational Change initiative and is a regional coordinator for the Time to Change campaign.
Judges’ comments: “His work is important.”
HSJ Patient Leaders 2015
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HSJ Patient Leaders 2015