What if we viewed lived experience as an asset? As an asset of professional, economic,…
With everything going on in the country currently, you’d be hard pressed to be able to ignore the negative press around the NHS, its future, the care it’s providing, patient satisfaction, and how other countries (without naming them) are trying to show the NHS as a failing, old-fashioned institution with no future. However, there is so much great and good about the NHS and it’s important these stories get their time in the spotlight. Given the current situation with Brexit, unless you’re involved in health you could’ve easily missed the new NHS Long Term Plan, which was launched in January 2019 to plan out the next 10 years of the NHS, its goals, aims and targets and how it will improve care, quality of care and outcomes for patients and carers, and also looks at workforce issues too. Now the NHS Long Term Plan is beginning to be put into force in the health service, NHS England and NHS Improvement announced the plan for the new NHS Assembly, a committee of people (doctors, nurses, allied health professionals, managers and patient and public involvement members) tasked with ensuring the implementation and embedding of the NHS Long Term Plan in all aspects of the NHS. It was opened for expressions of interest to apply to become a member on 20th February, and this period for expressions of interest ended on 6th March. The NHS England and NHS Improvement teams then had the hard task of whittling down the applications, of which there were over 500, to a shortlist who would be interviewed, and I was very fortunate to be offered an interview. My interview took place on 20th March and then the following week I found out I had been selected as a member, and the full membership was announced to the public on the 28th March.
What actually is the NHS Assembly? Further to my basic explanation in the above paragraph, and paraphrasing various descriptions of the Assembly that are dotted around online, here is a paragraph that sums it up:
“The NHS Assembly will bring together a range of individuals from across the health and care sectors at regular intervals to advise the joint boards of NHS England and NHS Improvement on delivery of the NHS Long Term Plan (LTP) and the improvements and tasks outlined within it. The Assembly membership will bring broad stakeholder insight and frontline experience to discussions, drawn from national and frontline clinical leaders, patients and carers, staff representatives, health and care system leaders and the voluntary, community and social enterprise sector, to serve as as a “guiding coalition” on implementation of the improvements outlined in the plan. More than 500 people applied to sit on the Assembly, with the successful applicants chosen based on their individual knowledge, skills and experience.”
I’m absolutely delighted to have been selected to become a patient and public voice/lived experience member and go being to the role a wealth of personal experience from my lifetime of dependency on the NHS for survival, from primary and community care to secondary/hospital care to tertiary care in London to attending NHS Highly Specialised Services for rare conditions and exceptional health needs, from home care packages to medications to palliative care to numerous medical life-sustaining interventions, from outsourced services including medical supplies, to pharmacies, dentists and eye clinics – I’ve used many of the services available on the NHS in my lifetime both for my survival and for quality of life. However, I bring more to the role than just extensive personal experience. I bring with me years of working with the NHS and social care and the VCSE (Voluntary, Community & Social Enterprise) sector, through roles with NHS England and NHS services including sitting on the NHS England Personalised Care Strategic Coproduction Group, NHS England Children with Complex Needs and SEND Board and others; to sitting on other committees including a NICE Guideline Committee for end of life care, Transition Taskforce Regional Action Groups, the BMJ Patient Partnership Panel and the CQC/Ofsted Board for SEND inspections; Consultancy and Advisory roles for NHS, statutory and voluntary organisations; running workshops and training; Ambassador roles for various charities including Together for Short Lives, the International Children’s Palliative Care Network, Dog Assistance in Disability and Include Me TOO, amongst others; to other patient leadership roles including with the Hospice UK People in Partnership Forum; to setting up and running patient networks and advisory groups including the international palliative care patient and carer advocacy network, Palliative Care Voices; to being a charity Trustee; being a founding member of the Open University Sexuality Alliance since 2013 and then setting up and running it’s Young Advisory Group “AdversiTeam” from April 2018; to co-leading and supporting research including purely medical research projects as a Patient Advisor, to co-researcher roles on Living Life To The Fullest, MAGICYL Dignity Therapy projects and other projects in development; to speaking at national and international conferences including Reform Think Tank Conference alongside James Sanderson, Director of the Personalised Care Group at NHS England, and Baroness Cumberlege, the Hospice UK conference, Lancet Commission Report Launch and QNI events; having a video speech played at the World Health Assembly and having my words read out at the World Health Organisation Executive Board; and more. My work is not just within the UK, it extends internationally on healthcare, palliative care, universal health coverage and access to medications, including with my paid consultancy (Patient Involvement Consultant) with the Worldwide Hospice Palliative Care Alliance. I hope I can put all of this knowledge and experience to good use.
My areas of great expertise, interest and experience includes topics (and LTP aspects) such as palliative care & end of life care, patient empowerment, personalised care (inc shared decision making, Personal Health Budgets, patient choice etc), digitally enabled primary and outpatient care, identifying and supporting carers, children and young people’s health, patient involvement, out of hospital care, cutting delays in discharge, transitions to adulthood/0-25 services and NHS volunteering, and have some experience and interest in stroke care, and on top of that knowledge of policy, frameworks, commissioning models, service delivery and improvement within these.
Today we had the very first NHS Assembly meeting and wow, what a fantastic meeting and what an incredible mix of people on the Assembly, we really are a diverse group bringing so much varied experience and expertise to the role. Our discussions today were great and so interesting. I really enjoyed it. I also got to meet so many amazing people – eminent and influential people – including friends I’ve known online for a long time. I contributed what I felt able to and learnt a lot from the discussions, I couldn’t take notes fast enough! Common themes of discussion were culture, behaviour, relationships, kindness, workforce, competition vs collaboration and coproduction/involvement of patients. I am really looking forward to getting ‘stuck in’ to this role and seeing where the Assembly goes and where the work takes us, and how we will grow and evolve. I thank NHS England and NHS Improvement for creating the NHS Assembly and ensuring people from all sectors, professional experience, departments, specialisms, voluntary sector and patient and public voice members are represented on the Assembly, I feel they got the balance just right. I also thank them for giving me the opportunity to be part of it and to enable me to contribute my knoweldge, experience, expertise and passion and determination.
I hope the NHS Assembly will turn out to utilise true Strategic Coproduction, done properly and that the integration of professionals from all aspects of the NHS, VCSE sector professionals, and patient and pubic voice/lived experience members on a level, equal playing field. From what I saw at today’s first meeting, this is definitely going to be the case. No hierarchy, true level playing field and mutual respect. Everyone is treated as an expert. You can’t get better than that.
This week it’s been #ExpofCare week, and I’ve loved seeing the great and good of our NHS through people sharing what the NHS is doing well, how it is making a difference, how committed NHS staff are to improving not only patients’ and carers’/families experience of care, but also patient safety, staff morale and valuing the contributions of everyone, as the NHS and the care it provides is a multidisciplinary, multifaceted, whole-team effort. So often when things go wrong it makes headlines, but ExpOfCare week has been about celebrating the great and good of our amazing NHS and the dedicated, hardworking, committed, selfless and generous individuals who are essential to the function and the running of our NHS. What we must remember is the NHS is not a building, it is not a standalone system, our NHS is actually the people who make up its workforce. They are the most essential cog in the NHS machine. Yes it is a system, a service, a provider, it needs to be commissioned and internally commissions all aspects of our healthcare service, but the NHS is the people, and it belongs to the people.
For more information, go to the NHS Long Term Plan Website:
Also, to its dedicated page on the NHS Assembly where you can also access a full membership list, our co-chairs and our terms of reference.