All posts by Kirsty

C4CC supports extending personal health budgets

C4CC co-chairs have welcomed the announcement yesterday that the Government is to back NHS England plans to make Personal Health Budgets (PHBs) more widely available as part of its Integrated Personal Commissioning (IPC) programme.

A formal consultation to extend legal rights to PHBs, which are currently restricted to people receiving NHS Continuing Health Care and children receiving continuing care, will be launched later this month, managed by the Department of Health.

Key C4CC partners have long pressed for people to be treated as equal partners and to have more control over their own health, care and support and believes PHBs are a key element in delivering better outcomes for people with long-terms conditions.

“PHBs can play a vital role in providing person-centred care to fit the needs of the individual and enable them to access resources that are available to them in their own community, ” said C4CC director Catherine Wilton.

“This proposed extension of PHBs aligns with our current work programme, which is focused on our ‘Three Cs’ of better conversations between patients and their care providers, co-production of health through better partnerships and the involvement of community resources in supporting people with long-term conditions.

“We will be liaising with our partners to provide our collective input into the consultation with the hope that our recommendations are fully taken into account when the plans are finalised.”

The consultation announced today will consider extending the legal right to PHBs to people who access wheelchair services; people with a learning disability or autism; armed forces personnel discharged from the service under medical grounds and people eligible for Section 117 aftercare services with ongoing mental health needs.

C4CC co-chair Anna Severight said: “As somebody with multiple long-term conditions I warmly welcome the announcement yesterday to increase the number of personal health budgets.

“PHBs give people more choice and control over their care, allowing them to select the support that works best for them and to be able to live the life they want.”

Paula Fairweather, a member of the C4CC co-production team, said a PHB helped change her life and wants others to benefit.

“My PHB meant I was able to access different support in a way that worked for me, buying equipment for physio specific to my needs and improving my health and helping me be more independent.”

“I have also seen PHBs make a huge difference in many other people’s lives, improving their health and quality of life. For example enabling someone previously housebound to volunteer and help others in the community.”

C4CC helped develop the IPC programme, which aims to integrate health and social care to better meet the needs of the individual and empower people to play a more active role in their own health and wellbeing.

Our co-chair Nigel Mathers commented: “I am pleased with this announcement endorsing the roll out of IPC and PHBs and the forthcoming consultation on extending the legal right to have a PHB.”

“C4CC has been a supporter of PHBs since their inception and the rolling out of IPC will strengthen the voice of people with long-term conditions in the NHS. “

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.

Living with Cancer and Thriving

Two months after we got married in 2009, Mike was diagnosed with an aggressive strain of prostrate cancer.

He had taken the wise step of having a test at his GP after hearing stories from friends about this cancer.

Mike’s prompt action has extended his life because had he left it any later his outcomes would have been far worse.

But at the time, I did not realise how much this was going to affect both our lives.

Our relationship was loving, intimate and well established but the challenges cancer has given us over the past nine years have been life changing.

Mike has been stoical through the biopsy, the radium and continuous hormone treatment.

He has dealt with his changing body image and being too tender to be touched.

We have needed to show affection differently, keep positive and deal with one challenge at a time.

I heard him talking on the phone the other day and in answer to a friend he said ‘Well I am still here’.

As a younger man Mike coped with depression and used work as a distraction, unfortunately he is now retired so no longer has the camaraderie of work colleagues nor the distraction of a gruelling work routine to take his mind elsewhere.

He is now self-catheterising weekly with no particular end in sight.

He has always found talking about feelings challenging so talking about his cancer or the changes it has had on our relationship is not always easy.

What has helped is my involvement as a trainer in the evidence-based self-management course Cancer: Thriving and Surviving.

This has given us tools and skills to live as effectively as possible despite the cancer and also to communicate effectively so that we both get our needs met.

The course has been compiled and implemented using a co-productive framework of those with experience of the condition being at the centre throughout.

Many of the trainers are volunteers and have personal experience of cancer.

It runs over six weeks, one session of two hours a week with the aim of gaining tools to live effectively despite the cancer.

The course includes activities such as managing pain, fatigue, and living with uncertainty as well as planning, problem solving and relaxation.

The activities I found most useful were working with the healthcare team and decision making about treatments.

We look forward to the years ahead with our family and friends and we plan, focus on all that is before us

We do not dwell on what life might have been without diagnosis, we do not have to as we are too busy living!

Check out the self-management courses on SMRC web site and their UK representative’s site


What can healthcare commissioners do to get everyone involved with health and care in their own communities?

The need for community-based approaches to give people a real and effective voice in their own health and wellbeing needs has been validated and given greater weight by the NHS Five Year Forward View and its recommendations under Next Steps to utilise those assets as a catalyst for change.

Realising the Value has drilled down to provide the evidence of the validity of these approaches and is a call to action to make it happen.

All well and good, but it’s our contention as authors of Commissioning for Community Development for Health that there are many decision-makers in the health system who want to strengthen community action, but have no model for how to start going about it.

We wanted to produce a research-based publication that addresses this need and provides a framework for action, starting in priority neighbourhoods.

It offers a systematic approach to increasing resident involvement in health-giving activity, mutual aid and community effectiveness across a CCG area, and provides the tools to get it going.

It offers:

  • a down-to-earth explanation of what community development is and does
  • where it fits in to current health policy
  • the kinds of health benefit that these methods can generate
  • a rationale for partnership with other local services to boost community activity
  • mobilising participation through all community groups and networks
  • addressing both health and care and the social determinants of health
  • making services more responsive to communities
  • designing a two to five year community strengthening strategy
  • phasing the work across the CCG, starting with priority neighbourhoods
  • what skills should be sought in recruiting project leader and staff
  • model contract for provision of the community development project
  • model baselines, milestones and key performance indicators
  • reconciling planned outcomes and objective evaluation with scope for flexible fieldwork method.

The Handbook closely reflects C4CC’s own 3Cs. So we are proud to help spread the message to a wider network.

It has also been endorsed by the Royal College of GPs and Think Local Act Personal (TLAP). support we obviously welcome.

But our work does not end with its publication and we are offering introductory seminars and practical workshops to commissioners and others keen to learn more.

As well as explaining the key concepts and instruments and looking at case studies, these can be tailored to particular audiences, priority local issues and participants’ needs.

Contact or for more details.


The Q Improvement Lab – peer support access survey

The Q Improvement Lab – an initiative supported by the Health Foundation and NHS Improvement – brings together diverse groups of people to work and make progress on complex challenges in health and care (further details here).

Since April, the Q Lab has been working on the challenge ‘what would it take for peer support to be available to everyone that wants it, to help manage their long-term health and wellbeing needs?’.

As part of this work, we are excited to launch a survey on what matters to people when making decisions to do with peer support. We hope you will get involved in this piece of research.

About the survey

The survey will help us understand what factors different groups of people – people working in health and care, peer support workers and the public – consider important when referring to, recommending or accessing peer support.

The survey was co-designed with Q Lab participants (a diverse group of 170 people including health care professionals, those working in peer support, those who receive peer support, charities, universities and patients to name but a few) and colleagues at the Health Foundation. We are also working with YouGov to help share the survey and collect responses.

We think that the survey will give new insights into the drivers around decision making in peer support and could help facilitate better conversations between those working in health and care, those working in peer support and people who could benefit from using peer support.

To help us get as many people as possible fill in the survey, please:

·         Complete the survey (it will take less than 10 minutes)

·         Share the survey with 3 or more friends and colleagues (here’s a document with suggested text and tweets to help spread the word)

The survey is open until 19 January.

Even if you haven’t used, worked in or even heard of peer support before – your insights are still valuable.

Let’s spread the word

This is not a small survey; we’re aiming to get over 2,500 responses.

YouGov are helping with collating responses, however we need the help of the health and care community to help spread the word.

Together we can contribute to what we think is an exciting and practical piece of peer support research.

Get involved and further information

If you’d like to be involved in shaping the outputs of the survey, would like further information about our work or have any questions, do get in touch via

Twitter: @theQcommunity    #QLabs

Hannah Patel, Insight and Evaluation Manager – Q Lab
The Health Foundation (Q Lab)

Developing Primary Care Leaders for the Future: An Accelerated Design Event

NHS England are running an Accelerated Design Event on 16th January 2018 in London on behalf of the National Coordinating Group on Primary Care Leadership Development. The aim of this fast-paced workshop is to shape national policy and support for primary care leadership development, and catalyse a movement to raise the profile of leadership development as a high priority for the long term.

The event is aimed at those who are engaged in leadership development, future-minded clinicians, patients and leadership experts, and those involved in the improvement and transformation in primary care.

Developing Primary Care Leaders for the Future:  An Accelerated Design Event

When:  Tuesday 16 January 2018, 10:30-5:00pm

Where: Amba Hotel Marble Arch, Bryanston Street, London, W1H 7EH, London

Please click here for more details and to register.

Registration closes on Wednesday 13th January 2018.

For further enquiries, please contact: Talyn Rahman-Figueroa (General Practice Development Team, NHS England)

Human Rights Day 2017

My mother died suddenly when only 55 years of age I was just 20 and suffering long term after effects of a road traffic accident.

Her nurturing legacy to me could be simply summed up in two basic principles, which I have tried to pass on and uphold in my own life:

Firstly; “Always remember you are no better or worse than anyone else” and just as importantly; “Do unto others as you would have done unto you.” Give and show respect – remember no one is perfect!

As time has gone by I have realised that these principles were a good foundation to understand human rights, with the UN Charter in 1948 setting the framework that in my view is as relevant and needed today as it was nearly 70 years ago.

AT THIS TIME, it is worth following the link and reminding ourselves of The Universal Declaration of Human Rights:

The Declaration, with its broad range of political, civil, economic, social and cultural rights, is not a binding document unfortunately, but it has inspired more than 60 Human Rights instruments that constitute an International Standard of Human Rights.

So what is the relevance to us in our daily lives?

Very simply, in part, it is to expect to be treated with respect, fairness, dignity and equality, without discrimination.

We do all have a responsibility and duty to others too and we do all need at times to protect the rights and freedoms of others.

I would argue that currently, for those living with the “outcomes” of long term conditions as a patient, service user &/or carer, that our basic human rights are too infrequently considered.

It is challenging enough in those circumstances, with rare pleasures mixed with pain, disease, hurt, frustrations and exhaustion.

Why is it that we can be made to feel inferior, alone and sometimes stigmatised, even discriminated against, by the very public sector services that are there to support and help improve our health and wellbeing?

That the “personal assets” we bring, through co-production working together, into our treatments may not be taken into account.

I would make the case that this situation could be improved for health and wellbeing by enshrining Parity of Esteem as a human right.

It would ensure equal treatments for all conditions, whether physical or mental health, with training, funding and commissioning distributed accordingly.

It would be about looking at the ‘whole person’ and their needs, which I believe would improve OUTCOMES with sustainability both to individuals, the caring services and of course, the health economy.

In these challenging times around the world, it is all the more important that we all stand up for Equality, Justice and Human Dignity.

After writing this blog and remembering my mother…… I now am counting my few blessings, but hope others find it thought provoking.


Evelyn Bitcon (Carer, Advocate & voice for the vulnerable, as well as having own long term health conditions), C4CC Co Production Group member


What now? Conversations after a terminal diagnosis

“We never expected the pain he experienced during the last week of his life… The reality was devastating for my husband and it subsequently had a huge and long-lasting effect on me… If we’d been given clear information about what to expect it could have been so different… No one sat me down and gave me information or explained what might happen.”

Pam, aged 60 from Cheshire, lost her husband Bill to heart failure in 2013. They had managed his heart disease and related illnesses fairly well for many years and were led to believe that Bill’s death, when it eventually came, would be peaceful, painless and at home. But when it did come, they were woefully unprepared and left unable to make the choices that were most important to them.

Pam was just one of the hundreds of people Compassion in Dying spoke to who are living with a terminal illness or caring for someone at the end of life. We wanted to understand what it is like to live with terminal illness, what are the challenges and how can they be overcome, and what advice people would give to others in similar circumstances.

People told us that they were often not given information about their prognosis or treatment options in ways they could understand. When they wanted more information, they didn’t always know the right questions to ask. They told us that opportunities for conversations about their care and treatment were missed.

 “The professionals involved waited for us to ask questions but we often didn’t know what questions to ask until it was too late. These were people who had watched many people die, and we needed them to offer more guidance.”

 In response we developed What now? Questions to ask after a terminal diagnosis to help people find the information they need and ask questions, so that they can make informed decisions about their treatment and care – helping them to live well in the time they have left.

What now_publication_1

What now? includes insights from people living with terminal illness, or caring for someone at the end of life. It shows the range of feelings, responses and questions that people can have, and how differently people experience receiving a terminal diagnosis.

People told us that having honest conversations with their families and healthcare teams helped them to understand what to expect, and to make the decisions that are right for them. They also told us that what they wanted to know could be forgotten in the moment, perhaps because the information is hard to take in, or because the conversation goes in a different direction.

What now? includes ‘tear out’ pages with questions people have told us they wanted to ask, so that others can ask them when having conversations with their health and care team. They span all aspects of living with terminal illness, and include questions like:

  • Can my family members be involved in decisions?
  • What kind of changes will I have to make in my work, family life, sex life, and leisure time?
  • What are the best things I can do to stay as healthy as possible?

We hope that What now? will encourage meaningful conversations between people living with terminal illness, their carers and their health and care teams.

Download or order a copy for yourself or the people you support.


Written by Natalie Koussa

Natalie is Director of Partnerships and Services at Compassion in Dying,  a charity that works nationally to support people to consider their wishes for the end of life, and to plan ahead to ensure what matters to them is known and can be followed.

Being positive about being positive

Often when we talk about HIV today we forget that for many people and communities, stigma is real. It’s still affecting people and their communities. Moreover, stigma is a tricky little beast; good at hiding.

Throughout the many years that we’ve been challenging these acts of disability-related hate crimes, it seems that many people have not been educated or exposed to the 21st century facts about living with HIV.

This is where stigma gets its mojo – when people perpetrate unkind acts that negatively affect others.

The global management of HIV is one reason people have told me why they haven’t felt able to take a test to find out their status. Their fear of a positive diagnosis, even within the UK where we have the Equalities Act and a strong evidence-based community, stems from personal fear.

Among the many labels out there, we now have another label for people –‘undetectable’. But for me, positive is positive and I ignore the medical narratives of infectious and undetectable.

Labels don’t help anyone manage the challenges of living with HIV – the label fuels the stigma. So, my view is that I’m being positive about being positive.

Too many of our brothers and sisters have poor health as well as psychological and mental ill-health issues related to that stigma.

Stigma is real and tangible to many of us, and I’m fed up with people feeding stigma with its trite treats of denial and apathy. Saying “times have changed” is a main course to stigma.

Walk in my shoes for a day and you would see things haven’t really changed. Intersectionality, the overlapping of discrimination, has an unpleasantly close relationship with HIV.

You could serve a smor- gasbord of HIV + poverty + BME + women + LGBTQ + groups that are so under the radar they are barely mentioned by the system.  These groups are stigmatised and living with stigma on a daily basis.

How can we really make a difference? It’s been over 30 years since the epidemic started affecting so many communities. I want to say to the world that we need to eradicate stigma with kindness and openness.

To mark last year’s World AIDS Day 2016, I set out to take steps towards reaching this goal. I went to Trafalgar Square to ask strangers to give me a hug with the tantalising invitation ‘Hug me, I’m HIV positive.’

I truly believe what a real grass-roots activist once told me – “Stigma kills, not the virus.” The late Elizabeth Taylor said, “It’s bad enough people are dying of AIDS, but nobody should die of ignorance.”

That’s why I’m positive about being positive. Maybe the global route won’t reach enough people so we need to make this battle against stigma and ignorance personal. So let’s tackle it, one person at a time, and leave a very nasty taste in stigma’s mouth by spreading knowledge, experience, hope and hugs.

This year has been all about supporting people to access the facts about HIV, to break the myths, and on Saturday December 2nd my Forest Gate Pride Committee took part in a community initiative to do just that and also to share a few hugs.


Isaac Samuels, member of Think Local Act Personal’s National Co-production Advisory Group (NCAG)

International Volunteer Day (IVD) 2017

Volunteering comes in many different forms; it might involve spending a few hours per week helping out at your local hospital or a charity shop, or a much bigger time commitment that becomes virtually a full-time job.

On International Volunteer Day I applaud everyone who takes the time and trouble to contribute their bit to society and would encourage others to do the same.

For very personal reasons, I fall into the latter category, devoting between three and four days per week in my various roles with Carers UK, Carers Trust in my home county of Cambridgeshire and as a member of the C4CC Co-production Team, spreading the word about the vital importance of our ‘Three Cs’ in involving people and their community in their own care.

I’m a campaigning volunteer, raising awareness about plight of the hidden army of unpaid carers, who like me devoted a very large part of their life to looking after the one they loved.

For me, it was my wife Sheila, who I looked after, for much of the time without seeking support, for over 12 years until she died 20 months ago.

Her passing has made me even more determined to spread the word about the support that is out there and also to campaign for more, recently marking Carers Rights Day by visiting parliament to both lobby and inform MPs.

For me volunteering has become a drug, as I know many people out there are struggling to cope with the pressures of caring to the detriment of their own health and welfare, many in near poverty and unable to cope.

If I can help to raise this awareness more openly, then I believe my contribution will have helped to make a difference.

After all, I have acquired specialist knowledge from over 28 years of caring, a lived experience that gives me an insight into many of the pitfalls a carer is likely to encounter on their caring journey.

There is much fantastic help available out there, but in my volunteering role along with others of the same thinking, we have helped to shape and streamline many of the available services so they are more user-friendly and cost effective.

This means the much-reduced council budgets have a better chance of fulfilling the needs of those with long-term conditions and their carers.

I am now 73, retirement for me is not an option I wish to consider, neither do I want to just wander around trying to find something to occupy the time aimlessly. I want our great country to be the very best at what we are good at…leading by example!

I don’t criticise anyone who chooses to spend their time that way, but my view is that if you have a wealth of skills and experience that can be used to the benefit of others then it is a tremendously rewarding experience and one I would thoroughly recommend.

I have made so many new friends and acquaintances through my work with three fantastic organisations and I hope to play my part for many years to come because despite the Care Act of 2014 enshrining much needed rights into law there is still much to be done.


Richard Cross, C4CC Co-production Team member