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

Advertisement

Successful Volunteer Recruitment Drive

Following on from the confirmation of Big Lottery Funding we launched a recruitment drive for willing volunteers. From one advert placed in a Carers Special Feature in the local newspaper we received 27 expressions of interest for all types of advocacy training. We managed not to scare most of them off and 14 have confirmed that they wanted to become Volunteer Advocates and 4 have decided that they want to share their own personal experience of cancer and be Peer Advocates.

We recently held 2 blocks of general advocacy training and the volunteers wanting to be Peer Advocates are in the process of doing the Macmillan online training and Cancer Advocacy training over the next 2 weeks.

Volunteer Co-ordinator Margaret Lambert (Back row left) with some of our new Volunteers

Patricia Wallis is a cancer survivor herself and has recently cared for her sister who sadly passed away after a cancer diagnosis. “I want to be able to share my experience of caring for my sister through her end of life so that another older person affecting by cancer may have a better experience than my sister and my family had.” She added “Support from hospices for end of life at home, comes in too late and some of the medical profession talk in language which is not always easy to understand particularly when you are hearing news that knocks you for six. I am so looking forward to starting my new role volunteering at Sefton Pensioners’ Advocacy, the advert  really caught my attention and the training has been really interesting.”

Patricia Wallis pictured on the right at her recent general advocacy training

Volunteer Co-ordinator Margaret Lambert added “It is really great to have all these committed and willing volunteers. We have been so impressed with the diverse experience of our new volunteers, from a retired medical doctor to a tennis coach who was a lines-woman at Wimbledon. It all makes for some really interesting stories”

Karen Pierce, Sefton Pensioners’ Advocacy

Why I’m a Local Cancer Champion in Knowsley

My name is Mary Spreadbury and I am 72 years of age. I have had cancer 3 times and I am still living a busy life and most of all I am enjoying myself.  I sit on the Local Cancer Champions Board in Knowsley, where KPAIS are delivering the Cancer Older People and Advocacy project.

I would like to share my experience with you. I have had 2 mastectomies and reconstruction.  The first mastectomy was in December 1995 when I was studying for my degree.  I had 6 weeks of radiotherapy (of course weekends off for good behaviour!) I went back to college and continued with my studies.  The second was a year later almost to the day in December 1996.  Then chemo and all that goes with it.

 I have had a few frights along the way.  At one time they thought the cancer had gone to my lungs, but luckily enough it was found to be the damage caused by the treatment that I have had to keep me alive.  Another time there was a lump in my neck, that was fatty tissue and so it goes on.  I always smile when they tell you that you are in remission, whatever that means.

 

Mary Spreadbury

I only had advocacy help in the last couple of years.  As I’m getting older I feel I need specialist help because my needs change with ageing.  This is why I’m volunteering with Knowsley Cancer Older People and Advocacy as it’s so important that advocacy for older people affected by cancer is a must.

Mary Spreadbury, Local Cancer Champion, Knowsley

Three months in…

Here at AgeUK Bristol we are now three months in to the Cancer Older People and Advocacy project and are developing some momentum. Much of our time since the project began has been spent contacting the many relevant agencies and groups in Bristol that we hope our work will compliment, from nurses groups to specialist benefit advisers for people affected by cancer. This has been a slow process – one thing that everyone has in common is that they are incredibly busy! – but one that will pay dividends in the long run. Having the support of our local Macmillan Cancer Support Involvement Coordinator has been invaluable for this process, with her local knowledge proving invaluable when it comes to knowing the right person to contact within a given organisation. Hers is also a useful name to drop when trying to arrange a meeting or to speak to someone on the phone – it seems that everyone has great respect for the work Macmillan does across the city and we hope a little of that respect can rub off on us by association. We are pleased that with her help we have been able to set a date for our first Local Cancer Champion Board meeting.

Alongside the work of spreading the word about the project, both to encourage referrals from relevant agencies and to try and recruit members for our Local Cancer Champions Board, we have started to provide advocacy to older people affected by cancer. These have largely come to us through our existing information lines and referral routes from other agencies, but we are now starting to see referrals that are specifically seeking this service. Obviously this is a very encouraging sign so early in the project and we are very lucky to have an experienced and professional paid advocate to take on these cases immediately. We hope that by being responsive to these early referrals and providing a top-quality service to these initial clients we will give our partner organisations confidence to keep identifying us as a much-needed source of support and advocacy for their clients. Even in these early days it is clear the service is much needed with client seeking help with a wide range of issues, from basic information and support through to accompanying people to treatment consultations to help deal with the bewildering array of information being given to them by their consultants.

A three-year project such as this is a marathon rather than a sprint, but the advocacy that has already been done for our clients gives us great hope for the long-term value this work is going to bring to people who really need it.

Ben Sansum, Advocacy Manager, AgeUK Bristol

National Cancer Survivors Day: June 1st

Sunday 1st June is National Cancer Survivors Day. Initially celebrated in the USA it is fast becoming a worldwide day to “demonstrate that life after cancer diagnosis can be a reality”

Cancer survivors across the globe will unite to show the world what life after cancer looks like. This unique celebration will mark the 27^th annual National Cancer Survivors Day. Thousands of people in hundreds of communities across the world will hold celebrations on this day to honour cancer survivors and to show that there is life after a cancer diagnosis – and it’s something to celebrate.

National Cancer Survivors Day is an annual worldwide Celebration of Life. It is the one day each year that we come together to honour everyone who is living with a history of cancer. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life,” according to the National Cancer Survivors Day Foundation, administrator for the celebration.

The day itself provides an opportunity for cancer survivors to connect with other survivors, celebrate milestones, and recognize the healthcare providers, family, and friends who have supported them along the way. It is a day for cancer survivors to stand together and show the world what life after cancer looks like.

“Sometimes people have very negative ideas of what life after cancer looks like,” says Foundation spokesperson, Laura Shipp. “But the reality is that more people are living longer and better quality lives after cancer than ever before. These survivors are showing us that life after cancer can be meaningful, exciting, and filled with joy.

“National Cancer Survivors Day is an opportunity for cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. It may not be the same as before cancer, but it can be beautiful, rewarding, and sometimes even better than before. And that’s something to celebrate.”

More information can be found on the National Cancer Survivors Day website, click here

Our Cancer, Older People and Advocacy project celebrates cancer survivorship and applauds our many peer volunteer advocates who are themselves cancer survivors. We often hear from our volunteers that it’s the very fact they’ve experienced and lived with cancer that drives them to volunteer to support their peers. Let’s all celebrate on June 1st.

Staffordshire Cancer Advocacy project is launched!

This is my first week in the full-time post as Project Lead for the Staffordshire (Macmillan) Cancer Peer Advocacy and Support Project as reported in my blog of 16th December. We have recently publicised the project locally and were fortunate enough to have one of our clients, David, talk to the press and participate in local radio interviews. The links are below:

http://www.stokesentinel.co.uk/8216-living-Stoke-Trent-shed-belonging-ex-wife/story-20506322-detail/story.html

https://soundcloud.com/chrisontheradio/cancersupport

http://www.signal1.co.uk/news/local/500k-boost-to-support-more-older-people-in-staffordshire-cope-with-cancer/

We have appointed our first 2 Volunteer Co-ordinators, one for Staffordshire (North) covering Stoke on Trent, Newcastle Borough and Staffordshire Moorlands District and one for Staffordshire (Central) covering Stone, Stafford and Uttoxeter Districts. One of their first tasks will be to recruit more Volunteers.

 

This initiative for people of Staffordshire is thanks to Macmillan Cancer Support and OPAAL and I will keep you all informed with developments and progress. Hopefully more advocacy projects will be able to provide this specialised, much needed service for older people.

Kath Curley

Staffordshire Cancer Advocacy Project Lead

New partnership creates Dorset Macmillan Advocacy

Keri Harrison, Access and Community Support Manager of Help and Care and Mike Pochin, Development Manager of Dorset Advocacy are delighted to announce that  ‘Dorset Cancer Advocacy Service’ is now going be delivered in partnership with Macmillan and renamed ‘Dorset Macmillan Advocacy’.

The Macmillan Partnership Fund has secured the future funding of the service for the next three years.  These funds will enable Dorset Advocacy and Help and Care to recruit, train and support more volunteer advocates to work with older people affected by cancer in Dorset.

Ed Murphy, Senior Macmillan Development Manager, said ‘I am delighted that we have been able to support this excellent and much needed project.  We are looking forward to working with Dorset Advocacy and Help and Care to support people affected by cancer across Dorset’.

Mike Pochin said ‘This partnership will now enable us to fully establish cancer advocacy in Dorset, and to benefit literally hundreds of people’.

A delighted Keri Harrison and Mike Pochin

Kathleen Gillett

Dorset Macmillan Advocacy