“everyone my client met treated her with dignity and respect”

Susan, one of our volunteer advocates, gives us a moving account of supporting one older person affected by cancer:

I am a volunteer advocate from Getting Heard (formerly Oxfordshire Advocacy) and a Cancer Older People and Advocacy volunteer, and one of my partnerships had significant interactions with the multi-disciplinary and multi-professional team. At each interaction, I as the advocate, was made very welcome and at no time did my client or I feel rushed, intimidated or feel that my client’s views were not taken into account. My client was involved in all decisions and staff took her views and concerns very seriously when developing her management plan, and she and I recognised that this was holistic patient centred care. Interactions with professionals and all other staff was extremely positive, medical and nursing staff welcomed the advocate when the role and responsibilities were explained, recognising the emotional and practical support available for the patient.

Susan

The specialist nurse made the initial referral as she was aware that my client lacked support attending consultations. I supported my client when she attended the gynaecology outpatients department for her first consultation with the surgeon following a diagnosis of uterine cancer. My client was determined that she was not going to undergo chemotherapy and my role was to support her achieve her wishes. Both the surgeon and specialist nurse listened to my client and when I intervened to clarify what was being said and questioned whether she understood the impact of her decisions, both clinicians were supportive of my client’s wishes.    

I supported my client pre-operatively and interacted with the nursing and support staff. At the post-operative consultation following keyhole surgery, she was seen by the consultant gynaecologist when she was informed that the cancer was invasive and they had been unable to remove it completely. My role was to support my client reiterate to the consultant that she did not want chemotherapy but agreed to have radiotherapy.

By her first oncology consultation my client’s physical condition had deteriorated and she had developed further symptoms, and the oncologist decided that she should have more investigations including a CT scan. By the second oncology consultation CT scan results indicated further spread, and the plan was for four sessions of palliative radiotherapy. My client asked me to attend a meeting at home with the hospice specialist nurse for moral support, at the meeting the specialist nurse discussed hospice support and pain management. I attended her first two radiotherapy sessions, however by the 2^nd session she had increasing pain and discomfort, weakness, urinary and bowel symptoms. By attending the radiology department, I was able to give physical and emotional support and assisted my client discuss her concerns with the radiographers.

My client fell at home and was admitted to the local hospital where I visited her in A&E and on the ward, where I met kind and caring staff. She was too unwell to be transferred to the hospice and died soon after following a stroke.

I was so glad to support my client during her various medical interventions both at hospital and at home, in order to support her through her cancer experience. I was able to offer support, and help her navigate the system and help her ask those often difficult questions and understand the response from professionals. It was a privilege to meet so many kind and compassionate members of the multi-disciplinary team, everyone my client met treated her with dignity and respect and nothing was too much bother. Feedback from professionals regarding the experience of working with an advocate was always positive and it was recognised that a well-informed and well-supported and empowered patient facilitated a positive staff : patient relationship. It was also recognised that the advocate had the time to support their client when professional staff had limited time and that support was consistent and flexible.  

Susan Mackie Volunteer Advocate, Getting Heard (formerly Oxfordshire Advocacy)

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Person-centred care and support – a moment of opportunity (part two) – Martin Routledge

Martin continues his two part blog to ask the question – What else can we do?

So what else can we all do to make sure that Vanguards and IPC help light the blue touch paper for person-centred care rather than fizzling out like a damp squib?

I have read a number of sceptical but persuasive pieces raising understandable doubts about both the ability of pilots (by whatever name) and top down initiatives to actually drive desired changes to delivery and culture across services and systems. As someone who has worked for more than 30 years at both local and central levels and as part of efforts to drive user-driven change I generally sympathise with this kind of analysis. The problem is they rarely offer real world solutions – sometimes suggesting over-simple alternative routes to achieving broad based change or ones that will be clearly impossible to bring about.

For those who are seriously committed to person-centred care, engagement with the (inevitably messy) real world and multi-faceted approaches to making deep change happen will be necessary. We need thoughtful action at the ‘top’, the ‘bottom’ and in the middle!

So, while the national initiatives themselves will not transform health and care services, they are inevitably an important part of the picture and we need to help them to play the best part they can. We will have to powerfully and persuasively describe how person-centred approaches are necessary to achieving their objectives and how they can be delivered.

In parallel though, we will need to do a number of other things. In very brief outline these include:

• Connecting (in a two way process) what is happening and being learnt in the programmes to a broader group of people and places, who want to see person-centred care at the heart of future public services, so they are not waiting for ’results’ from central initiatives but can offer and use learning in real time. This will include supporting ’early adopters’ outside of national programmes – who have some advantages in being able to act outside of programme constraints.
• Supporting people using health and social care to themselves drive change at local levels, through groups and organisations looking to co-produce support and shift services in the direction of person-centred care. This is about gradually building a powerful movement that will demand and support better forms of public service delivery, based on real partnerships between people and professionals and better use of all types of resources.
• Work with professional leaders, groups and networks: sharing person-centred solutions to the problems they face in their work and energising their shift to co-production with those they serve. Linking these professionals to the growing movement of people using public services to become a joint force for person-centred support.
• Act to ’create the conditions’ for person-centred care in a range of ways, including sharing powerful evidence in different ways and influencing professional bodies and funders of training and development to prioritise person-centred approaches. We will have to support commissioners to prioritise person-centred care and increasingly support the building of non-traditional, non-medical supports and capacity. Action to create the right conditions also includes helping policymakers to see person-centred care as core to what they are trying to achieve and how they can pull system levers to support and incentivise them

None of these things will be easy to do and it is not any single group or organisation’s job to do them. This focus on person-centred approaches will be hard to achieve in an environment of unprecedented financial pressures, competing priorities and the current lack of experience within the health system in particular.

This is why the Coalition for Collaborative Care came together and launched in November of last year. We are a voluntary alliance of organisations and people with an unapologetic focus on person-centred care and support. We are bringing our energies and influence together to achieve, over time, a sea change in how people with long-term conditions and professionals work together. We are modelling this by working in co-production with people with long-term conditions, carers and professionals. We don’t have a multi-million pound budget and we don’t want one – our model for action and influence will be through the activity of our partners and members and our support and assistance to them. If you are interested in hearing more please see here, and there are still a few places left at our gathering in Manchester on Thursday May 21.

So, in conclusion, will the Vanguards and Integrated Personal Commissioning transform health and care and initiate the era of person-centred care? No, of course they won’t, on their own. But those of us who want to see this new era should take the opportunity they offer us with both hands. The Vanguards and the IPC programme are an opportunity to show what is possible if we really put people at the heart of public services and work in partnership, together. C4CC will be doing all we can to take this opportunity – please join with us and help build the person centred health and care system of the future.

Person-centred care and support – a moment of opportunity (Part one) – Martin Routledge

Kath Parson OPAAL’s Chief Executive welcomes our first Guest Blog from Martin Routledge the Director of Coalition for Collaborative Care who examines opportunities coming from the Five Year Forward View:

Today I’m attending the launch of the New Care Models Vanguard Programme and reflecting on what I think will come to be seen as an important period in NHS history. There are real opportunities to build on the great strengths of our NHS while making important shifts which reflect a changing society. But these opportunities will not take themselves.

March saw the announcement of the Vanguard sites and the Integrated Personal Commissioning (IPC) sites. Both national programmes have been broadly welcomed as the start of bringing Simon Stevens’ Five Year Forward View to life. The next few years are likely to determine the shape of health and care services for decades to come as these initiatives point the way for the rest of the system.

My personal experience of similar programmes over the past 15 years tells me that for those of us advocating person-centred care and co-production alongside people using public services, this is a moment of great opportunity but at the same time risk. We must ensure that the opportunity is taken and the risks minimised.

There is a strong tendency for those involved in these kinds of programmes, both centrally and locally, to focus almost exclusively on making changes to organisational systems. Under great pressure to deliver, usually with very difficult timescales, programme leaders are always at risk, whatever their motivations, of focusing on the plumbing and wiring rather than the people. This is not to say, of course, that the structural and system elements – like joined up budgets and integrated organisational and professional arrangements are not vital – they are. It does, however, mean there is a tendency, right from the design stage, not to place person-centred approaches centre stage. They are always there in public pronouncements and stated goals but the link between them and the detailed strategies and plans is often weak.

There are many reasons for this. Co-production with the users of public services in designing and delivering them is still quite novel, perhaps especially in health. The reality is that, for many, it is also still quite counter-cultural and made difficult by our systems. As professionals we feel we are already person-centred and usually try to be so, but the experience of those we serve often tells a different story. Doing this properly takes time – something that high profile programmes often feel they don’t have. This can lead to superficial engagement rather than serious co-production – itself undermining trust and even generating cynicism.

In addition, although the evidence base for achieving person-centred care is increasingly strong, these approaches have not yet gained serious traction in health. For example, only small numbers of people with long-term health conditions report having a care plan they co-developed with their health professionals. Programmes which aid self-management, shared decision making, enable peer support or link people to community supports for well-being are not routinely commissioned at the necessary scale.

So there is a potential nightmare scenario here, of merely shifting deckchairs, rather than realising a serious person-centred win-win.  This win-win will require people using health and social care services, and wider communities, taking responsibility and action for their own health and well-being. It will require strong communities, local third sector organisations and universal services playing a much more significant role. This can’t be achieved just by joining up organisations or integrated teams working in a more co-ordinated way with people. It also requires the release of capacity and energy from people, families and communities, which only comes from them being at the heart of how things are done and through different, supportive uses of professional skills and system resources.

This is where the opportunity lies. We increasingly know what works in generating much more effective relationships between practitioners and people using health and social care services, and so better outcomes. Two key means are personalised care and support planning and what C4CC partner Nesta has called More than Medicine. It is therefore vital that right from the start, the localities involved in NMC and IPC do the following things:

• Co-produce the design of the local initiative with local people using public services and maintain this co-production at strategic and operational levels of decision making throughout. This requires going well beyond consultation.
• Ensure the powerful involvement of local voluntary and community sectors and re-direct resources during the period of the programmes to community based support
• Give at least as much attention (probably more) to the model of care as to the financial and organisational model.
• From the start, design key elements of person-centred care to be at the heart of the care model – including personalised care and support planning, support for shared decision making and self-management, peer support, community based support for health and well-being and help for people to connect to these.
• Design evaluation approaches with people using health and social care and incorporate outcomes that are meaningful to people, not just to the systems commissioning them.

Our early involvement with the IPC programme gives us encouragement as the selection of sites and early design of delivery support has prioritised and committed to these things. I have heard Simon Stevens say that three things he wants to see from the programme are:

• Joined up services and supports
• More powerful users of health and social care
• A very different relationship between the NHS and the voluntary and community sector

The sites will be challenged in keeping on this track, and we would advise local people and organisations to do all they can to help them maintain this focus. It will be necessary for those involved with the Vanguards programme to do the same. C4CC will offer as much advice and assistance as possible to the initiatives.

Part two of this blog, What else can we do? will be published on Thursday 30 April 2015.

Martin Routledge is NHS England’s Director of the Coalition of Collaborative Care. He has worked in public services for 33 years, twenty of them spent working mostly for and with local government – often leading integrated  social care and health teams and initiatives and incorporating periods of academic work and teaching in higher education.

From 2002-11, at the Department of Health, Martin played a leading role in the development of the personalisation agenda initially in social care and then extending to health.

From 2008-11 he led the national Department of Health Putting People First initiative.

After leaving the Department Martin led the establishment and was first manager of the Think Local Act Personal national leadership partnership for personalisation and was Head of Operations for the charity In Control – which pioneered personalisation across public services.