All posts by Kirsty

“I have been on a journey of enlightenment”

‘If you want to be part of a radical movement for change and reform, sign up here!’ reads our flyer, as we announce recruitment for the seventh cohort of the Leadership for Empowered and Healthy Communities (LEHC) programme.

I have always been passionate about the importance of community in people’s lives and the need for people to have a voice in the design and delivery of local services.

I was an elected councillor in Reading for eight years, representing a ward that contained areas of significant deprivation.  During these years I became acutely conscious of the stark difference in health outcomes between people living in my ward and those just a few miles up the road, with some residents living on average eight years less than in wealthier parts of town.

I saw the mistakes that can be made with a top-down, ‘we know best’ attitude and of the waste and pointlessness of silo working between different agencies.  I saw the magic that can happen when organisations come together with local people to imagine and create solutions together – through community development and whole systems approaches and by ensuring that what matters to people is at the centre.  And I also realised that we needed a new type of local leadership to enable more of this to happen – for senior leaders, politicians, and those who provide services to be able to be flexible, genuine, open to new ideas and to be able to work collaboratively.

Some years later I had the opportunity to develop a new leadership programme, with backing from Thames Valley and Wessex NHS Leadership Academy, Skills for Care, the Local Government Association, Think Local, Act Personal (TLAP) and the Association of Directors of Adult Social Services (ADASS).

The LEHC programme started off as a pilot in 2012 and became part of C4CC’s core offer in 2016.  It has now reached over 160 participants, drawn from towns and cities across the country.

Co-produced from the beginning, the programme aims to equip senior leaders and clinicians with the necessary skills and understanding of concepts such as co-production and community development, and then to sell the case and embed these ideas in the places in which they work.

The programme has attracted the interest and praise of leaders in health and social care, up to and including the Secretary of State, Jeremy Hunt, who came to see the programme in action for himself.

But it is the feedback that we get from participants and the change that we see them making in their local areas that inspires me to continue.

One participant told us just a few weeks ago:  ‘I have been on a journey of enlightenment. My colleagues (on the course) have been inspiring and I have learnt far more skills than I thought possible.’

For further details of course dates read more here or contact:  Jan Smith at

Carers need more support and the proper tools and training for the job!

When I was asked to be part of a keynote presentation with our C4CC partner Carers UK to senior civil servants at the Department of Health, I was naturally delighted.

It was an important opportunity to lobby on behalf of the army of unpaid carers, who are so often forgotten when it comes to government policy.

C4CC has been working closely with Carers UK, which has been supporting carers for over 50 years and has had a major influence with successive governments. I was accompanied by Emily Holtzhausen, its Director of Policy and Public Affairs, for the meeting.

There were 16 people in the room, but we were linked by video conferencing to officials in Barnsley, Runcorn and Leeds, so I felt we had a good audience for our message.

My role was to give an insight of the life experienced as a long-time carer for my late wife Sheila. Also to give a wish list of how things can be improved in order to give these much undervalued people the opportunity to do this incredible job much better for all concerned.

It was a lengthy one, but boiled down to being better respected for the vital role we fulfil and not to be ignored and marginalised, as sadly, is so often the case.

As part of the C4CC co-production team, towards the top of this list was to be treated as an ‘expert by experience’, because we know the person we are caring for better than anyone, and are entitled to a major say in their treatment and support.

But, I was asked by the officials, if there was a single thing that you could change, what would it be?

My response:  ‘To have proper training and the tools to do the job, just as everyone else in a working environment has and is entitled to by law’ !.

In a workplace, employees have every right to expect to receive the proper training and equipment to carry out the tasks they are asked to carry out.

They have every right to expect their company is compliant with health and safety regulations to protect them and others.

It is nothing short of a scandal that Carers have little or none of these safeguards and checks in place.

They are just left to get on with it, caring for a loved one with complex issues and with little or no training in how to do this safely and effectively.

For example, how do you successfully care for someone who has major suicidal issues ?, how do you care for someone in constant and uncontrollable pain if you cannot be given a proper nursing bed for them to lay in ?, how do you wash and dress them ?.

The safe use of medication is also a real problem that needs to be addressed.

The cared for person will often need a complex range of medication, but little information is supplied to the carer about its side effects.

If more than one consultant is involved there can often be a problem with communication as I know from personal experience with my wife who suffered a serious reaction to drugs she was given by one consultant that conflicted with those given by another.

It resulted in a hospital admission for two weeks during which time her condition was described as serious.

In my role as an advocate for carers, I can quote many other examples of poor practice that simply would not be allowed to happen in a workplace, but are part and parcel of their world.

Carers have a right to get the correct tools for the job, when they are required, without the delays that often occur as local authorities carry out protracted checks and their own risk assessments.

They need training how to use them correctly and to nurse the person they are caring for and finally, and importantly they should expect the necessary support to make sure their own health and wellbeing is not adversely affected in doing such stressful work.

This means regular health checks for them and more respite breaks.

My presentation was completed when I posed the following question.

If tomorrow morning, instead of coming to work as usual, you had to give up working here to care for your loved one, as they now had an illness which required 24/7 care with no breaks, holidays or time for yourselves.

That this would be for an indefinite period (probably the rest of your life), that you would get no recognition, no incentives, no support, just problem after problem, day after day, and for this you would get paid less than 40p per hour, would you leap at the chance to do this ?………….., they all shook their heads, …..I had no takers !.

But I hope that Emily and I had got our messages across and that things will change for the better because carers deserve nothing less for the vital role that they fulfil.

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 Severwright 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.