Coping with more than cancer

In today’s blog post Kathleen Gillett from Dorset Macmillan Advocacy looks at the issues facing older people affected by other long term conditions as well as cancer:

Coping with cancer is one thing, coping with cancer and one or more other long term condition is another. Peer advocates listen to the people they support to discover what matters most to them and may be surprised to find that having cancer can be the least of their worries.

At Dorset Macmillan Advocacy we have collected some information on the long term conditions and health problems that the people we are supporting are living with.  We have found that of 110 people referred to us for support in 2015 50 have at least one other long term condition, 26 have two conditions including drug and alcohol dependency issues and 7 have 3 conditions.  The conditions include sensory loss, diabetes, heart condition, memory problems, arthritis, MS, ME, epilepsy, hiatus hernia and mental health issues. Not everyone wants to disclose all their health issues and we have not in every case methodically recorded where this information has been given so I think it is safe to say that there are likely to be more issues than we actually know of.

In fact 70% of people with cancer have one or more additional long term condition according to research carried out by Macmillan Cancer Support.  It’s clear that the situation for people with limited social support networks, such as older people, can be very difficult.  Independent advocacy services such as ours can be flexible and support people with their concerns when they are wider and more complex than the cancer diagnosis.

Health professionals are aware of the implications especially as regards treatment options for older people.  The British Geriatric Society has a special interest group (SIG) for Oncology which met for the first time last September and Kath Parson of OPAAL gave a presentation about the Cancer, Older People and Advocacy programme.  In a write-up of that event Dr Lucy Dumas said ‘Older patients with multiple medical co-morbidities and/or issues with care or coping at home represent a significant challenge when it comes to evaluating whether or not they will be able to tolerate potentially toxic therapies’.

Over the next year we hope to gather more information about the wider health issues of the people that we support. As well as asking for their feedback on the difference our service has made we may be able to gather their views on how their other conditions have impacted on their cancer patient experience.

Kathleen Gillett, Dorset Macmillan Advocacy

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Advocates in Integrated Care: making a difference..

Sam Bond, Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, explains why advocacy can make a real difference

“The use of health and social care by people with cancer” a 2014 study commissioned by The Department of Health, shows a clear link between cancer diagnosis and use of social care.  The report explains “For some social care is critical to their independence and ability to participate in society.”  However, use of social care by people with cancer is not equivalent to use of social care by people with other chronic conditions. A report by Macmillan in 2010 ‘Cancer should be as much a social concern as it is a health priority’, found that statutory social care was not meeting the needs of people with cancer. ‘People were often not referred for an assessment and did not know about the types of services which may be available. The research also found that those who commissioned social care services had limited understanding of the specific needs of people affected by cancer.

However, recent updates to legislation aim to transform the delivery of health and social care. The Care Act now places a duty on local authorities to work more closely with health services in order to promote the wellbeing of adults and improve the quality of care they receive. The Care Act espouses core values of ‘wellbeing’ alongside ‘whole person’ care, promoting independence. It extends the right for eligible people to access independent advocacy so that they can be involved in social care assessment and safeguarding processes. But what about advocacy support for people to be involved in integrated health and social care processes? What will ‘whole person’ care look like for people affected by cancer? My understanding is that it must be based on the needs of the individual and their particular circumstances.

Cancer advocacy services, born of a collaboration between Macmillan Cancer Support and The Older People’s Advocacy Alliance, are responsive to people affected by cancer and their individual circumstances. The trained advocates, professional advocates and peer advocates with their own experiences of cancer, have time to build a relationship of trust with the client, listening and finding out what’s important to that individual (‘the whole person’).

When I started my role as Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, I had some concerns that health and social care professionals might view advocates warily. However, my experience so far, is that health and social care professionals welcome the opportunity to have the involvement of an advocate to support their clients.

Sam Bond

I found a recent conversation with a health professional quite revealing on this matter. He told me that the hospital where he worked had had an experience where some paid carers accompanying clients to appointments sometimes behaved in an adversarial and accusing manner towards health professionals. He said he had found that particular carers sometimes had their own agendas when they accompanied patients to appointments. This caused the health workers felt defensive and sadly the patient’s wishes were getting lost in the middle of all of this.

Having worked as a paid carer myself for a number of years, it is not my view that paid carers generally act in an accusing way. However, this example does emphasise the value of properly trained advocates.  An advocate’s only concern is to represent the wishes of the person instructing them. Advocacy is certainly NOT about accompanying a client to an appointment equipped with a detective’s notebook and a suspicious frown! Of course advocates can and must raise concerns regarding the quality of care if clients wish them to. But this is just a fraction of what advocates do.

An advocate can extend the support that health and social care professionals are able to offer. For example, Cancer Advocates can provide support by helping people to prepare questions for appointments in order that the person can make the best use of time with a clinician, as well as attending alongside the person. Advocates can ensure the person understands, gathering information and explaining information that might not be clear or requesting clarification. They can write information down for the person, and/or talk through the information again later on. Advocates do not give advice but help ensure clients can access information and consider its implications in relation to their particular circumstances, so that they are able to make informed choices. The benefit of Advocacy is that the advocate is instructed by the person.  This puts the person in control at a time when they may feel that they don’t have much control over the cancer, the treatment, the side effects, or their life.

Clients often say they are concerned about who will be their point of contact. There may be a number of different health and social care workers involved, which can be confusing for people. For a person affected by cancer an advocate can be a consistent person alongside them helping to access services, and navigate the health and social care system. An advocate can be an asset in assisting good communication between client and health and social care providers and between the professionals and client. An advocate can ensure the person’s views are represented, helping the client to get the most out of health and social care and promoting the client’s independence. Cancer advocates are great examples of the way in which advocacy support complements the work of both health and social care professionals.

Sam Bond 

Phone: 01273 737888, Email: Cancer Advocacy@bh-impetus.org

 

Is peer support part of the solution to future-proofing the NHS, asks Johanna Ejbye

This blog first appeared on NHS Voices www.nhsconfed.org/blog on 15th June 2015.  I would like to extend my thanks to both NHS Confederation and Johanna Ejbye who have kindly allowed us to reblog Johanna’s post on peer support here.

A couple of months ago, I visited Maggie’s Centre West London. The centre is based right next to Charing Cross Hospital and offers free, practical, emotional and social support to people with cancer and their families and friends. The building itself is a beautiful and calm oasis, full of daylight, bright colours and spaces for conversation and reflection. It’s the type of place that is reassuring to know exists.

I was struck by one thing from the conversations I had with staff and the people using the centre. While the professional support on offer was key and hugely valued, it was the centre’s role as an open space for sharing thoughts and experiences with peers that was highlighted again and again as the central anchor when receiving a cancer diagnosis, throughout treatment and beyond. People made friends at the centre, they swapped tips, had fun together and supported each other when things were tough.

Maggie’s Centres are a brilliant example of what we at Nesta call ‘More than Medicine’¹. The centres function as a natural extension of clinical work, taking the starting point of the individual and what matters to them. And what matters to many people using the centres is the opportunity to receive informal, or formal, support from their peers.

This chimes with a research review of more than 1,000 published studies which we recently conducted with National Voices. The aim was to better understand which types of peer support are most effective, what costs they incur and what benefits they bring.

Overall we found that peer support is worth investing in as a way of supporting people living with long-term health conditions. There are potential wide-reaching benefits: better mental and physical health, cost savings, and wider social value. However, we also found that the research base is still in development and that there is little research that adequately assesses cost-effectiveness or would help commissioners to build business cases.

The bigger picture: the NHS as a social movement

Plugging the gaps in the research is becoming increasingly important. The NHS Five Year Forward View set out a vision for the NHS to develop a new relationship with patients and communities and support people with a long-term condition to manage their own health and care.

The background for this is twofold. Firstly, life expectancy has increased as people live longer and some, with one or several long-term conditions, for many years. This calls for a healthcare system that looks beyond curing people from acute and infectious disease.  We need to be able to support people to live – and live well – with long-term health conditions.

Secondly and equally important, the Forward View sets out how the NHS of the future needs to transcend organisational barriers and become not ‘just’ a national health service but a national social movement for better health. We all have a role to play in looking after our own health and the health of others – and the NHS has a role to play in making it easier to do so.

In effect, peer support is an example of how social movements and networks can benefit the health and wellbeing of an individual. It is therefore vital that we get much better at understanding the costs and benefits of peer support, and putting the existing knowledge into practice.

Nesta and National Voices are working together on Realising the Value, a new initiative to find, test, and share the best ways in which people with health conditions work with their communities and health professionals. Realising the Value is delivered by a large consortium of partners with a strong track record and expertise in the area of putting people at the centre of their own care.

A quote from one of the visitors at Maggie’s Centre West London describes how cancer “hijacks your life and drops you into a situation where you have to learn a new language”. In our vision for a person-centred, people-powered health system, the support of peers, family and friends complements clinical and professional services to form an integrated whole. Learning the language of a new condition is never easy, but it helps to learn together.

To follow progress and findings from Realising the Value please sign up to our mailing list.

¹ See also our work on People Powered Health, our recommendations for boosting citizen participation and volunteering in health, or the Nesta and Cabinet Office Centre for Social Action Innovation Fund to test different types of peer support and gather evidence on them.

Johanna Ejbye is a senior programme manager in Nesta’s health and ageing team.  Follow the organisation on Twitter @nesta_uk

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.

A view from a Local Cancer Champions Board member

My name is Joan Cox and I am a member of the Age UK Bristol Local Cancer Champions Board (LCCB).  As an Age UK Bristol trustee I was very pleased when we received the funding from OPAAL to run a Cancer Older People and Advocacy Project, and was keen to support the development of this work.  I hoped I could bring both professional and personal experience to the Board.

I have retired, but spent my working life in health and social care.  Initially I worked in social work and vocational further education, then in the voluntary sector managing community projects, some part of national programmes, providing services for carers, people with dementia, and adults with other health needs including cancer.  Many of these projects recruited and trained volunteers to work with service users.  On a personal note I had cancer myself 25 years ago and am very aware of the impact of receiving a diagnosis of cancer.  I was in my 30s, very fortunate to have the support of friends, family, and work colleagues during my treatment, and made a full recovery. Other people’s experiences, particularly those of isolated older people can be very different from mine, and this is why the Project is so needed.

Joan Cox

 

There have been two meetings of the Age UK Bristol LCCB to date – in September and December 2014.  My fellow champions are:  Piers Cardiff (Macmillan Regional Volunteer Development Manager), Sue Perry (Age UK Bristol Trustee and former Director of Abbeyfield), Carole Dillon (John Dillon Foundation, a new charity for cancer care in the Bristol area), and Tracey Street (Macmillan Involvement Coordinator for the South West).  Ben Sansum (Age UK Bristol Information and Advice Service Manager and the Project Manager) has supported the Board and acted as interim chair, taking minutes and distributing papers.

So far we are a small, but focussed and enthusiastic, group keen to learn about the progress of the other OPAAL projects around the country as well as thinking about how our local project is developing.  We have shared ideas about many aspects of the project including publicity, referrals, volunteer recruitment and support, how we can use our local contacts and networks to share information about the work, and encourage others to join our Board.

With volunteers’ support for older people at its heart, the Cancer Older People and Advocacy Project reflects the wider ethos of Age UK Bristol.  All our services for older people rely on volunteers to keep them running, and we are very keen to support volunteering amongst older people themselves as it offers opportunities to enhance their personal well being.

Across Bristol the project complements other support and services for people with cancer, and is being welcomed by local agencies as well as the individual older people who are being referred.  We appreciate that it is still early days and it will take time for the project to grow and develop, but we are confident we have made a good start and look forward to the future.  The LCCB has an important role to play guiding and overseeing the project and using our local knowledge, contacts and networks to help it grow.

 

Joan Cox, LCCB member, AgeUK Bristol

 

Mind the Gap: Voluntary sector could bridge the integration gap.

I spoke last week for the first time at the annual NHS Confederation Conference, where both Jeremy Hunt and Norman Lamb hailed the “enthusiasm” for integration, which has seen £5.2bn of health and care budgets pooled; well exceeding the proposed £3.8bn.

I’d been invited to speak about our ground breaking national Cancer Older People and Advocacy project, developed and supported by Macmillan Cancer Support and the Big Lottery Flagship team’s recent £1,000,000 investment. I was fortunate to share a platform with distinguished colleagues including Richard Bowden UK Managing Director BUPA, Caroline Abrahams Charity Director from Age UK and Ian sutherland Director of Social Care – South Eastern Health and Social Care Trust NI, and my colleague, a lady who completely stole the show Marion Summers a Volunteer Peer Advocate from Dorset.

Marion is a fairly typical cancer advocacy project volunteer. An ex member of the NHS Marion has a good professional understanding of how the health system operates, she’s been touched by cancer herself so is full of compassion and empathy for her peers and critically she is highly motivated to retrain as an Advocate and to ‘give something back’ providing a vital link and support to older people affected by cancer needing both health and social care. Marion supports people in need daily and often struggles to understand why we don’t work more closely together to pool resources and provide personalised integrated care as ‘after all we are all trying to do the best we can for the same person’. Marion is right of course.

I’m with Mike Adamson, Managing Director, British Red Cross when he argues today in his excellent article in Community Care that the voluntary sector is key to health and social care integration, not an optional extra, a truly preventative system will need more than the integration of the NHS and social services. As Parliament debates health, including the Better Care Fund today, we urge the government to regard voluntary organisations as a core part of the health and social care system, not merely as an optional extra – not least because of our experience in bridging gaps between these services.

I’ve reproduced much of Mike’s article below as I feel he encapsulates my views on the thorny subject of integration entirely.

For years, the voluntary sector has added significant value to the work of health and social care professionals, in many areas essentially helping to integrate them. According to the King’s Fund, three million people across England already volunteer in health and social care. The benefits are many and by no means purely financial. For many individuals the company of a dedicated and passionate volunteer can be invaluable, particularly when needs are primarily practical and social and linked to isolation.

The link between people living lonely, isolated lives and deterioration of their physical and mental health is widely acknowledged, including by Norman Lamb. Providing low-level, but high-impact, preventative support through volunteering opportunities enables more people to play a role in looking after our ageing population in the community, including older people themselves.

If the Better Care Fund is going to keep people out of hospital and result in better care, the role of the voluntary sector in delivering it needs to be strengthened. We specifically want health and wellbeing Boards to be mandated to engage with the voluntary sector as an equal and active partner in planning and delivering the Better Care Fund.

We want recognition that, particularly in the context of limited public funds, only a true tripartite of health, care and the voluntary and community sector will achieve the Better Care Fund’s aims. Lessons need to be learnt from Scotland’s Change Fund, where engagement with the voluntary and community sector is now mandatory, after the first year of funding resulted in little of its ambition to innovate and transform. ‘Third Sector Interfaces’ now ensure this engagement happens.

There is further to go, but the learning is there – ready for us to utilise. The mandate has secured legitimate and meaningful engagement, and the vast majority of Third Sector Interfaces report that their partners now have a much stronger understanding of the sector, what it has to offer and the expertise it brings.

Within the context of an ageing population, the voluntary sector has a crucial role to play in creating a sustainable health and social care system. Many hospitals already work closely with both social services and voluntary sector organisations like the Red Cross and see volunteers as an integral part of their team, particularly when it comes to discharging patients – but this is by no means consistent. The Better Care Fund offers our best chance to replicate this integrated practice across the system. By engaging the voluntary sector and focusing on preventative services, health and wellbeing boards can utilise the Better Care Fund in a way that improves the sustainability of the system.

Only by health, social care and voluntary sector services working together will we be able to provide adequate care to all who need it, and we believe that none can fulfil their true potential without the support of the other. The challenge is to make the most of these opportunities – and the Better Care Fund is one we should seize.