All posts by Kirsty

Embedding co-production at all levels of care

Margaret DangoorMargaret Dangoor, member of C4CC’s co-production group shares her experiences of helping to deliver co-production at a local level in celebration of national co-production week (2-6 July 2018) #coproweek.

In all the fanfare around the 70th anniversary of our wonderful NHS, it may have been easy to miss that it’s also been National Co-Production Week.

In PR terms, it could indeed be seen as an unfortunate clash, but as someone who has been promoting the principles of co-production on both a national and local level for a number of years, I take the opposite view.

If the NHS and our social care services are to continue to prosper and improve for the next 70 years and beyond then we need to firmly embed the principles of co-production at all levels of care.

It’s a model for the future and I’m heartened to see that it is gaining traction within NHS England and in many different local authority areas.

I have been actively involved for nearly 30 years in the London Borough of Richmond upon Thames. Initially I was involved in the community and voluntary sector, then focused on the development and chairing of statutory patient participation groups.  On becoming a carer for my husband who developed Alzheimer’s disease I became particularly involved with representing the voice of users and carers within the local NHS and borough health and social care services, whether at strategic level, influencing commissioning – or monitoring provision.  I am also currently chair of a local health centre’s patient and public involvement forum.

I’m pleased to say that Richmond was an early adopter of co-production several years ago and marked the national week with publicity around the work that is being carried out, particularly with carers.

“Involving the users of care and support services, and their families and carers in making decisions about how their care is delivered empowers them to be able to live full, independent lives,” was a quote from Cllr Piers Allen, Cabinet Member for Adult Services and Health.  I cared for my husband Eddie for many years until he sadly passed away in January of this year and was grateful for good local support, particularly a specialist dementia day centre and a Caring Café supported by the local authority.

From personal experience, I found that being able to have a say and being listened to is so important in end of life care. Properly planning for the final few weeks, in liaison with the family GP practice, when medical intervention was limited but supportive was so beneficial.

Following a short stay in hospital and discharge, we made a conscious decision that it was not in my husband Eddie’s best interest and agreed a plan as to how he would see out his final days in the community, with compassionate care and dignity.

I firmly believe that having a good death is an important part of having a good life, and the principles of co-production are so relevant in this area.

I’m determined to carry on this work locally as chair of the health centre patient participation group and my other local health and social care involvement.  I am also involved with social care research, through the NIHR school of social care research and the personal social services research unit based at the London School of Economics and Political Science, as well as my national involvement on the C4CC co-production group and as a trustee of the Centre for Ageing Better.  I also volunteer for Carers UK and the Alzheimer’s Society.

I think it is true to say that NHS England can promote and support strategies around co-production, but it needs to work at a local level and that is happening both in Richmond and other areas across the country so it is great to get both perspectives; in fact, it is essential.

The benefits of collaborative working across the health and social care system and using community assets to deliver care are a fundamental part of C4CC’s Three Cs and are so important as we celebrate the past successes of the NHS and build a service for the future.

 

‘Co-production isn’t a one-night stand’

Mandy RudczenkoTo mark SCIE’s Co-Production Week, #coproweek, which runs 2 July to 6 July 2018, Mandy Rudczenko, member of C4CC’s own co-production group has written this blog post on the importance of co-production being a long-term relationship. Mandy’s post is timely given that this week we’re also celebrating 70 years of the NHS #NHS70. It highlights just how far we’ve come over the years in recognising the importance and value of co-production in health services.

Mandy is a former mental health nurse and adult education tutor and helps her son to manage Cystic Fibrosis. Mandy has become an active campaigner for co-production of health and social care services, person-centred care, and self-management of long-term conditions and has contributed to design and co-production of many NHS services. She has served as an Expert by Experience on the Five Year Forward View People and Communities Board, as a lay member on a Clinical Reference Group (CRG) and is a member of the East Midlands Clinical Senate Council Read Mandy’s full bio here.

I recently found myself using the phrase ‘Coproduction is not a one-night stand’. It seems quite a popular way of emphasising that ‘Coproduction is a long-term relationship’ (TLAP – Ladder of Coproduction, see below).

In my 5 years as a patient/carer representative, aka patient leader, aka patient ambassador, aka expert by experience, aka lay member, aka patient partner, the most important thing I have learnt about co-production is that it isn’t a new thing. I remember having a brilliant English teacher when doing my ‘O’-levels. She treated us like adults and we planned our lessons with her, as a class. I didn’t know at the time that we were co-producing. All I knew at the time was that, this teacher was popular because she realised that our contribution to lesson planning was of equal value to hers. She was brave enough to break down the hierarchical barriers and, as a result we more motivated and learnt more. To me this shows that the basic principle of co-production is that we treat everyone involved as an equal member of the team. Surely that should happen anyway? Why does it need a label?

In terms of health and social care, it gets tricky. I vividly remember my first meeting as a lay member, at a Clinical Reference Group, 5 years ago. I was terrified. I had to go to London, which felt like an expedition. I was able to claim back the train fare but wasn’t paid an involvement fee. I didn’t even know what an involvement fee was, and, to be honest, I felt honoured to be invited! During the discussions I felt like a fraud as I didn’t understand a lot of what was said. I managed to suggest a few things from a patient/carer perspective, so I walked away quite pleased with myself. It took 3 months to get the train fare back!

So, was I an equal member? I now know that I wasn’t, and that CRG’s and similar hierarchical committees, actually make coproduction impossible. I wasn’t an equal member of the  CRG for many reasons. I wasn’t involved in producing the agenda; I wasn’t able to access the medical information being discussed; I didn’t understand my role. Looking at TLAP’s Ladder of Co-production (below), I definitely felt coerced, and flattered, which is even worse!

For co-production to work, the public has to be equally involved in planning AND delivering services. TLAP’s Ladder of Co-production (below) clearly shows the importance of ‘doing with’.

Image showing TLAP's co-production ladder

In the last five years I have experienced some excellent examples of co-production. The most exemplary examples are those which involve ‘co-producing the co-production’. As a member of C4CC’s co-production team I was involved in co-producing its ‘Co-production Model’:

It was lengthy process, demonstrating the commitment to doing it properly. The process of co-producing it reflected all the values and behaviours within the model. The model wasn’t done to us or for us, it was done with us.

Similarly, I have recently been involved in an ‘Expert Advice and Ideas Session’ to co-produce the UCL Centre for co-production in Health Research:

In her blog, Niccola K Hutchinson Pascal (Project Manager) says:

“For me, it was critically important that the process of developing the Centre needed to be a shining example of good practice in co-production – after all, how could we show/tell people how to do co-produced research properly, if we weren’t doing it properly ourselves?!”

When I first started my journey as a lay member, I didn’t know what co-production was. I knew that, as my son’s carer, I was sick of us being ‘done to’. I now know that true co-production has to start on Day 1.

Mandy Rudczenko

@mandyzenko

 

‘Thank God for the NHS and Nye Bevan!’

Photo of C4CC co-chair Nigel MathersTo mark 70 years of the NHS, C4CC’s co-chair, Nigel Mathers, writes this blog post on why he owes so much to the NHS and what his hopes are for the future.

I owe so much to the NHS.

I had severe asthma as a child and without the NHS, back then in the early 1950s – in its infancy, it would have been very difficult to get a good quality of treatment.

After training at medical school, I spent my entire working life in general practice, a fulfilling and rewarding career.

And just last year it proved a life-saver after I suffered a major heart attack and collapsed in the street.

Fortunately, an ambulance crew arrived in only seven minutes and was able to resuscitate me at the roadside. I had just a five percent chance of survival and was rushed to the coronary care unit at our local hospital.

Thanks to the skill of the surgeons and the wonders of modern medical technology I pulled through and have made a great recovery with a good quality of life.

Of course, this is one of the major success stories of the NHS, survival rates from heart attacks, many forms of cancer, particularly breast cancer, and a host of other diseases have dramatically improved over the past 70 years.

Way back then, heart attack victims were prescribed prolonged bed rest, while my rehabilitation has been based around daily four to five mile walks – tough at first but necessary and now part of my daily routine.

So it is easy to see why I care so much about the service launched by good old Nye Bevan in 1948 and now having to adapt to the very different landscape of 21st Century Britain, with all the challenges that brings.

As a former Honorary Secretary of the Royal College of General Practitioners (RCGP) and as co-chair of the Coalition for Collaborative Care (C4CC), I have been campaigning to bring about the changes to the health system that I believe can help it thrive for the next 70 years and beyond.

The NHS and social care services are currently under immense pressure through a combination of an ageing population and over 15 million people living with complex long-term conditions.

C4CC believes that the answer to easing these pressures, and providing people with the high-quality care and treatment they deserve, lies in our Three Cs – Better Conversations, Co-production, and Stronger Communities and happily there is now general consensus that this is the way forward. This personalisation of care has captured the zeitgeist – ‘spirit of our times’

As I look back on my career in general practice, which spanned over half of the 70 years since the NHS started, many of us were already using or beginning to harness these key principles in our daily work.

When I started as a GP, consultations with patients lasted the grand total of five minutes, the relationship was much more formal, with nobody calling me by my first name, and conversation and interaction was strictly limited, not least because of time.

In my inner-city practice, we tried hard to break down these artificial barriers by dressing informally, having soft furnishings in the rooms and never sitting directly behind a big desk when talking to people we adopted a conversational style across the side of a desk for consultations.

It was innovative at the time, but is now seen as best practice and of course consultations can now last up to 15 minutes, giving the opportunity to get to the root of a problem, which may not require costly medical intervention.

Co-production as a notion has also been around for a long time, it was just not called it.

In the 1980s we talked about a meeting of experts, with people experts on themselves and what might work best for them, and doctors the experts because of their medical training.

This evolved into RCGP best practice around shared decision-making, designed to encourage the patient to be an equal partner in their own care, the basic principle of what is now called co-production.

I’m particularly proud that C4CC has developed a model for co-production that seems to work and which has been adopted by our partner NHS England in its planning in this key area.

Finally, we have always relied on community and the voluntary services to address the unmet needs of our patients and sometimes [sadly] to fill the gaps in health and wellbeing provision for our communities.

My practice and many others were prescribing exercise in the 1980s, organising bi-weekly walks from our surgery for those we felt might benefit.

We now call this social prescribing and whether it is running, walking, joining other community groups or simply volunteering it has been found that these non-medical referrals can relieve the burden on the NHS and tackle issues such as loneliness and social isolation, themselves major causes of illness.

So while our Three Cs may not be new, I believe they really have captured the spirit of our times and as the NHS looks to the next 70 years will play an increasingly important role in policy direction and strategy.

It’s about changing the culture – about helping people to become active participants in their own care rather than passive recipients of that care – to encourage them to be far more involved in their own care and treatment.

The staggering pace of scientific development will, I believe help play a major part to facilitate this.

Wearable technology such as Fitbits and other devices allow people to monitor their fitness and general health.

There will be far greater interaction with people and health professionals through the Internet and advances in genetic technology [eg individually tailored drug treatments] are another area that has such tremendous possibilities for everyone.

Despite the current challenges, I believe we can look forward to the future with optimism.

I know C4CC and our partners in the coalition have a key role to play in shaping that future and to lead this social movement for change in the way that we work with people to improve their care and deliver better health outcomes for all – ‘personalised care’ for all – right across our NHS.

Nigel Mathers, Co-Chair of C4CC

 

 

Communication: The first step to ensuring person-centred care at the end of life

Picture of Natalie Koussa from Compassion in DyingNatalie Koussa is Director of Partnerships and Services for Compassion in Dying, one of the Coalition for Collaborative Care’s (C4CC) partners. In this blog post Natalie stresses how conversations are a critical part of delivering person-centred care at end of life. Natalie shares two experiences to highlight the impact that good communication can have and shares a newly published booklet that can help people consider and record their wishes for healthcare and treatment.

Picture this: a man in his 90s with memory problems. He is widowed and living alone in his own home with help from family and carers for daily tasks. His health takes a downward turn when his kidneys begin to fail. His doctors tell his family that the man doesn’t have the capacity to make a decision over whether or not to receive dialysis treatment.

His family are at a loss – they have never spoken to him about what he would or wouldn’t want in a situation like this, and now he can no longer tell them. They are trying to work out how to make this weighty decision while dealing with the news that a loved one is seriously ill. Family members might disagree with each other or doctors about what they think is best, compounding what is already a difficult and upsetting situation.

Now picture an alternative scenario: the man takes the time to talk about his wishes with his family while he is still able. They speak about what is important to him (living at home, spending days in the garden and watching the sea) and what he finds difficult (travelling and having to visit new places). They talk about who he would want to make decisions on his behalf if he no longer could, and he decides to appoint his son as his attorney for health and welfare.

When his health takes a turn for the worse and doctors look to his family for guidance, they are still deeply saddened, but instead of feeling lost they feel empowered. The dialysis might delay things for a few more months but would cause major upheaval in his life, with frequent and lengthy trips to the hospital. It is not an easy decision, but having had those all-important conversations his son is able to reflect on what his father would have wanted and refuse treatment on his behalf while keeping him comfortable and pain-free. This allows his father to spend his final months doing the things he enjoyed most – seeing his family and enjoying his garden.

Fortunately, the second version is the truth. The name of the man is Christopher, and his son Peter Coe, 69 from Lyme Regis, has shared his experience in Compassion in Dying’s new booklet, Planning Ahead: My Treatment and Care.

Planning Ahead is designed to help people consider and record their wishes for healthcare and treatment, so that they can get on with living life safe in the knowledge that they have prepared for the future. It explains in clear, straightforward language the information people need to understand how treatment and care decisions are made, how they can plan ahead to ensure they stay in control of these decisions, and who to talk to and share their wishes with. What Christopher and Peter’s story illustrates so well is how helpful honest conversations are to this process.

‘Conversation’ is one of the Coalition for Collaborative Care’s ‘Three Cs’ precisely because conversations are an important way to build the shared understanding needed to offer compassionate and personalised care; but talking about the end of life can seem a daunting and difficult task for individuals, family members and healthcare professionals alike. That’s where Planning Ahead comes in – it serves as an easy-to-follow guide which can prompt different discussion topics and ease conversations about people’s values and concerns when it comes to their future treatment and care.

If we are to ensure that people receive person-centred care at the end of life, talking is the first step. We hope that Planning Ahead will help encourage and inform these conversations so that more people have experiences like Christopher and Peter’s.

@NatalieKoussa / @AGoodDeath

A new model to encourage person centred approaches to long-term condition management in primary care

Dr Ollie HaDr Ollie_Hartrt is a GP partner in the Sloan Medical Centre in Sheffield and clinical lead for the person-centred care work stream in the city.

Dr. Hart has been involved in an innovative pilot research project, based in his own inner city practice with 13,000 patients, to make the case for a more person-centred approach to how primary care can support people living with diabetes. In this blog for C4CC he shares his experiences.

The overview

The pilot was set up as first step towards how we can assess and segment people living with long-term conditions like diabetes, so that care can be tailored to their individual needs.

This avoids over-treating people who are doing well, and offers a more holistic, personalised approach for people who feel less confident, skilful or knowledgeable to look after their health.

It also enables health systems to focus a ‘medicalised approach’ on those most ready for input, avoiding waste and improving satisfaction all round for both staff and patients.

The full rationale and evidence for this approach is presented in more detail in this paper,  a shorter summary paper is also available.

The new process

As part of their scheduled annual review (in their birthday month for ease of recall), people with diabetes are initially assessed for the traditional markers of disease control.

At the same time they are assessed for how they perceive their self-management skills, knowledge and confidence, using the Patient Activation Measure (PAM). The results are then used to segment people into one of four quadrants.

Letter group: Low medical complexity (appropriately controlled disease markers) and high activation (PAM Level 3 or 4), would be determined as doing fine, and be treated with a light touch. In practice this involves writing them a letter to congratulate them on how they are doing, and encouraging them to do more of the same.

Practice group: High complexity (one or more markers of disease control not met) and high activation. The working assumption is that with higher activation people are more ready for a conversation with a stronger focus on medical management and medical focused goals and activities.  Therefore this group is invited into the practice for review with a doctor or nurse, who is given longer to have a coaching style consultation.

Wider support group: High complexity, low activation (PAM level 1 or 2). The working assumption here is that people in this group are more likely to struggle to interact well with a purely medical model.

They are more likely to be overwhelmed with other life issues, with health care low on their list of competing priorities, or feeling under confident or under-skilled to take on self-management.

They may well appreciate the more holistic approach that could be offered by a non-traditional provider, as an initial point of contact.

They can give them more time, and consider a wider range of issues beyond just health. This approach is sometimes referred to as ‘social prescribing’. At its best this involves a co-production process where patient and advisor consider the person’s individual needs and preferences, and matches them to the best resources and support available.

This might range from a series of 1:1 conversations with a health trainer, to cooking classes, to exercise opportunities, to review of benefits and finances.

It would still be important that people in this group are offered medical service input, but on the terms that best suit the patient.

There would be a strong focus on collaboratively agreed ‘small steps’ (health or otherwise), with the primary aim to build a patient’s activation as well as creating conditions for better health and wellbeing.

Prevention group:  Low complexity, low activation. People in this group satisfy traditional medical targets but the assumption is their low level of activation puts them at risk of future poor disease control and they may well benefit from support to build their activation. This might include considering their health literacy, and their wider circumstances and coping skills.

Those people segmented into wider support or prevention groups are contacted by telephone to have a shared decision making process. Their results are explained and they are offered a range of available options depending in the local provision. Those managed in the Letter or Practice group are still offered access to social prescribing through signposting in the letter or via the practice team, if they wish.

Feedback

Practice patient feedback was proactively sought via the patient participation group, through enquiry in face-to-face appointments, and at a diabetes patient group. This last group included 15 patients who had experienced the new quadrant model over the previous two months.

The feedback was that the patient body felt this was an appropriate and acceptable model to pursue. Some people who fell into the Letter group, identified the value of an appointment to help ‘maintain their motivation’. However, they acknowledged that this be seen as a lower priority in a system under strain.

Practice staff involved in this approach, particularly the nurses conducting the long-term condition reviews report that their consultations are more appropriate and satisfying.

Conclusions

I recognise that segmenting people in this way could be seen as an artificial ‘pigeon holing’ process that presents a reductionist approach to the complexity of people’s lives.

I also recognise that assessing people’s activation using a questionnaire has limits. These are discussed more fully in the longer paper.

However this approach is intended as a very deliberate ‘first step’ in implementing a personalised approach to LTC management.

Just like learning to drive a car, applying new processes requires simple easily understood steps towards a new way of doing things. This applies both to patients and practice teams.

The reality is that there is very little funding available for new innovations, and GP practices are reporting very high levels of workload.

Therefore attempts to embed new person centred approaches, must include identification of where it is fine to do less, to allow time and energy for new learning and practice. Focusing practice time on those most ready for medical input, allows practice staff to spend longer pursuing a more robust health coaching style approach, developing care plans that are meaningful to the patient.

The value of addressing the wider determinants of health, especially in those at lower levels of patient activation, also has to be recognized.

Evidence suggests that this often best delivered by community teams, closely networked into local non-medical services and support. This model systematically directs people most likely to benefit towards these services.

In summary, this segmenting approach seeks to safely and appropriately tailor care towards an individuals needs.

It seeks to make the most of finite resources and the range of people and organisations that can contribute to a holistic approach to health and wellbeing.

New Model for Long-Term Condition Management (longer paper)

Segmenting Care in Long-Term Conditions (shorter paper)

“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 lehc.TVWLA@hee.nhs.uk

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 www.selfmanagementresource.com and their UK representative’s site www.talkinghealth.org