Tag Archives: Person-centred care

Putting People at the Centre of their Own Care

Alice Maynard, chair of the guideline committee for C4CC partner NICE, says all the evidence points to the need for people to be given a real and effective voice in their own care.

Social care is very personal.

People have their own care needs and we must understand those needs to ensure people receive the best possible care, delivered in the way and at a time when they need it.

Care must be tailored, personalised and most importantly be centred on the person who’s accessing it, otherwise, how can you actually give someone a positive experience?

This is why, as a part of my role on the guideline committee at the National Institute for Health and Care Excellence (NICE), we’ve developed a new piece of guidance which looks at people’s experiences of social care and recommends that adults who need social care should be able to shape the care they receive so it fits around them and enables them to be the person they want to be.

It’s hugely important that people have a say in their own care.

Everyone is unique, we all have things we like or dislike and having our preferences respected, understood and met is what truly makes the difference when we receive care.

This was a key element of the guidance. It fundamentally recommends that people accessing social care services are treated with dignity, as human beings who have their own history and experience that shapes who they are.

Professionals assessing people’s needs must look at the person’s history, recognise their preferences and really understand how these can be factored in to the care they receive.

When we developed this guidance we had a clear aim – to help improve people’s experiences of social care. Being a person who uses social care myself, I know how it feels to be on the receiving end.

Often, it’s people who don’t receive care who make decisions on social care frameworks, processes and protocols, yet they may not understand the impact of their decisions.

It can be very challenging as a social care user to know what standard of care you should be expecting.

Should you let someone treat you a certain way that you might not think is right? Or can you say “please can you do it this way?”

To make sure people are cared for properly, health and social care must work effectively together.

But there are so many challenges the system is facing. Between 2010-2013 we saw Local Authorities’ total spending fall by 8% and this is projected to continue falling.

Just last year, The Health Foundation found that by 2030/2031 there will be a funding gap of £9.2bn for adult social care, a total of 40% of the projected budget.

Bearing this in mind, bringing these two systems together is now more important than ever before.

Ultimately, working together will mean those people accessing services receive the best quality care regardless of where that care comes from.

The guidance encourages social care practitioners to consider how the processes they use for assessing people’s needs and planning and delivering care can be tailored to individuals.

The committee worked carefully to find and examine the evidence, ensuring our recommendations were fair, honest and focused on actually improving people’s experience.

We wanted to make sure that people’s thoughts, views and opinions are heard so they can shape the care they receive.

It’s really important that those involved in social care services listen to people’s views.

I’m just hopeful that, by using our guidance those providing social care services will be able to make a real difference to people and ensure their experience of receiving care is a positive one.

C4CC continues to extend its reach

The New Year has brought fresh opportunities for the Coalition to extend its reach and grow the national movement towards a better deal for people with long-term conditions.

We attended the Long-Term Conditions Conference at the QEII Conference Centre in London on 22nd January 2015 to run a session focusing on the Coalition’s work.

Our stand received a steady stream of visitors from across the health and care professions, all keen to hear more about our vision and to ask questions about the Coalition.  Catherine Wilton, Deputy Director of the Coalition for Collaborative Care, also led a workshop attended by almost 90 practitioners, carefully co-designed and co-delivered with four members of our Co-production Group – Evelyn Bitcon, Richard Cross, Neeta Mehta and Fiona Carey.

The workshop explored what it would take to make person-centred, collaborative care a reality across the country and introduced our recently published Care and Support Planning handbook. Co-production Group members also shared personal stories.

Richard shared his experiences of caring for his wife.  Neeta talked about becoming an expert in the care of her daughter, despite having a long-term condition herself.   As well as having a high profile slot in the main plenary session of the morning, Fiona opened the C4CC session and shared a story about her friend who was unable to avoid a hospital stay for her son as the system was not set up to provide the preventative care he needed. Evelyn talked about challenges she faces as a carer with the current health system when providing support to her son who has Post-Traumatic Stress Disorder.

Towards the end of the session, the participants were asked to write pledges – a commitment of what they would do to create the conditions for that to happen.

Strong themes across the pledges included becoming a member of the Coalition for Collaborative Care, working to educate others about the benefits of people-centred care, sharing ideas and best practice with one another and reviewing current policies and plans to remove barriers to good care and support planning.

Catherine Wilton said: “The conference was really encouraging. The conversations we had with health professionals indicated that there is a real appetite for changing how the health service as a whole needs responds to people with living with long-term conditions.

“Having a Co-production Group is an invaluable part of our approach and their experiences help to shape our vision for the future.  A number of healthcare professionals in the workshop mentioned how powerful and impactive they found hearing from our Co-production Group members.

“Nearly 60 more people joined the Coalition on the day of the conference which is great news as it continues to extend our reach and create the possibility of achieving our vision for the future.”

To view our Vision document please click here.


Janet’s story: life with a personalised care plan

Janet Brown lives in Nottingham with her husband. She has Multiple Sclerosis, ME and Fibromyalgia. Here she tells her story of life with and without a personalised care plan.

Before 2007 I was a successful, outgoing, well-connected business consultant.  I was involved in regeneration work which I loved, I had written a book and I took every opportunity I could to travel. In short, I was loving life.

But in 2007, everything changed.  My ME suddenly deteriorated. With a number of neurological conditions overlapping, life became very difficult.  I couldn’t walk; my balance completely evaporated and I found simple tasks like getting in and out of bed unbearably difficult.

I looked to my GP to help. In fact, I looked to a number of consultants and healthcare professionals.  I was desperately clinging to the hope that I wouldn’t have to give up my job.  I needed to have a purpose in life.

My GP is very good but the only thing he could offer me was medication and the side effects of it were hugely debilitating.  I continued to accumulate more and more GP appointments until I eventually found myself embarrassed to be there.

So I retreated to my home where I became house-bound, in fact bed-bound, within two years. I lost my social links; I became isolated, unhappy and progressively more and more unwell. My muscles weakened further and I could feel myself declining into a fairly dire situation.  It’s upsetting to think back to that time because I ended up in a very dark place.

With my confidence at a particularly low ebb, I reached out to the ME Society in the hope that I would be able to speak with people via phone for support. Whilst support groups were available, regular phone contact wasn’t an option but the Society did tell me that the local Clinical Commissioning Group (CCG) were running a pilot to trial personalised care and support planning for people with ME. I realised that this could be just what I needed so I called the CCG,  which marked the beginning of an incredible journey for me.

Someone from the CCG came to visit me. They wanted to hear more about my situation and they approached me with such empathy and understanding. They assigned me a ‘broker’ – someone who would work with me to create my personalised care plan.

In our first meeting he started off by asking what was important to me; what were my core values; everything about me and my life. I was quite taken aback because those questions aren’t directly about health. But I now realise that he wanted to know what would motivate me to get up, get out and re-engage with life. When we eventually talked about the impact of my conditions, split down into physical and emotional well-being, we created an enormous cascading list, which was the basis from which we created my care plan. I found the process very easy.

Sometimes the process of care planning reveals that the person needs a service that is not currently provided. This was the case for Janet, whose CCG offered her a personal health budget as part of the care planning process. 

I was assigned a personal health budget which I was to manage myself, with some assistance, and it afforded me access to a vast range of things which went far beyond medication. Soon I was enrolled in physical therapies which improved my core strength and muscle control and provided significant pain relief which lasted weeks at a time. I was out and about, walking in a way that I hadn’t been in years. I saw a nutritionist who helped me to create a menu plan which alleviated some of my symptoms and gave me lots more energy.

Experiencing a loss of health with all that it entails can feel like a complete loss of identity and, I now realise, that the emotional effects had been having as significant an impact on me as the conditions themselves. Before the personal health budget, that purpose in life which I had tried to cling onto the early days was all but gone. When I was asked what made me happy, I didn’t have an answer. I couldn’t think of anything that would spark excitement, enjoyment or any kind of euphoric feeling in me. But my personal health budget addressed that too. As well as having relaxation therapy, I signed up for an art class – something which I had enjoyed decades before. Very quickly my zest for life returned. I found myself waking up at 3am, excited to get downstairs and begin my artwork. This year, I plan to enter a competition with some of my pieces which is quite an incredible turnaround from where I had been.

During the time that I had the personal health budget, I didn’t see my GP very often at all. Miraculously, I came off all medication and, without the side effects, felt better than I had done in years. I was managing my condition myself and it was very empowering. It was a win-win. I got my life back and the health service spent far, far less money and time on my care.

Sadly, the personal health budget pilot only lasted one year, and whilst I am trying to maintain some of what had been in place, the truth is that without the budget it is very difficult to achieve. My pain has flared back up and my balance is deteriorating. I now have a dedicated MS nurse, physiotherapist and an occupational therapist – none of which I required when the budget was in place. I see a pain consultant once a month and I am back on what I know to be very expensive medication.

Everyone wants to be well; no one wants to be sick for the rest of their days. I really believe that I have too much to offer to be bed-bound for the rest of my life. So I’ve got to fight for me and the personal health budget helped me to do that. I can’t tell you how much. It made the most tremendous difference.


Personalised Care and Support Planning Handbook Launched

The Coalition for Collaborative Care and NHS England have launched a new handbook focusing on new ways of working to provide the best care for people with long term conditions.

The ‘Personalised Care and Support Planning Handbook’ is designed to spark new thinking amongst health and care practitioners about the best ways to locally implement personalised care and support planning.
The handbook provides practical support for local health systems hoping to introduce and sustain care and support planning at a local level and give people with long term conditions more control over their lives.

We know that evidence shows people living with long term conditions who have the opportunity to co-design their care within the wider context of their lives, have significantly better outcomes. Yet, just 5.4% of people living with such conditions in the UK report having an agreed care plan.

We have published this handbook which contains practical guidance, case studies and evidence in the hope that it will help health practitioners and commissioners understand how best to introduce personalised care and support planning.

The handbook complements a guide published by Think Local Act Personal (TLAP) and a short film published by the Royal College of General Practitioners (RCGP).

Professor Nigel Mathers, Honorary Secretary of the Royal College of General Practitioners and Chair of the Coalition for Collaborative Care said: “There is significant evidence which tells us that people who have personalised care and support plans self-manage their conditions much more effectively.
“There is improved monitoring of their health and care, fewer medical interventions are required and there is often less unnecessary use of medication.

“To make personalised care and support planning a reality for the 15 million people in the UK living with long term conditions requires significant changes in systems, relationships and services.
“We are committed to working with the coalition’s members and partners to create the conditions for these changes to take place. We whole-heartedly believe that personalised care and support planning sits at the very heart of person-centred, co-ordinated care.

“The handbook provides an introduction to personalised care and support planning so that individuals with key local responsibilities for the future of the health service can reflect and think innovatively about local approaches to implementation.” A copy of the handbook can be downloaded here.

David Paynton, one of the members of the Coalition’s Partners Group and National Clinical Lead for the RCGP Centre for Commissioning, talks about personalised care and support planning in practice in his recent blog post.

New resources available on care and support planning

Today, the Think Local Act Personal (TLAP) Partnership publishes new advice for councils on meeting Care Act 2014 requirements to ensure people, families and carers lead development of their own care and support plans.  This complements the care and support planning animation published by the Royal College of General Practitioners (RCGP) on Friday 16th January and the Coalition for Collaborative Care/NHS England handbook to be published later this week.

TLAP’s ‘Delivering Care and Support Planning’ has been developed with people who use services to show what good care and support planning looks like in practice.  It is backed up with examples from councils across England who are leading the way in this area. It describes the principles for what people want in a care and support planning process, the elements that need to be in place and recommendations for councils so they can be both Care Act compliant and person-centred in their approach.

The RCGP’s film brings care and support planning to life in a three-minute video animation, narrated by RCGP President ,Professor Mike Pringle.  It depicts a typical 10-minute GP consultation with a person who has multiple and complex illnesses and how care and support planning could lead to much better outcomes for everyone involved. The animation demonstrates how doctors can save time and improve health and social outcomes for people with long term conditions, noting the key role that carers, families and the wider community play in ensuring good person-centred care.

The guide & template support plans can be downloaded from the TLAP website here.

The animation can be viewed on the RCGP website or via  Youtube.