Anna and the Coalition for Collaborative Care

Anna trained as a Dr for 6 years before her new career was cut short after 6 months when her health deteriorated, and she was forced to leave her job. During some very hard times Anna was forced to take stock of her life.

Anna and the Coalition for Collaborative Care

Anna became aware that the Coalition for Collaborative Care (C4CC) was seeking people with lived experience of long-term health conditions to join their newly formed Coproduction Group. C4CC are a major influencer at a strategic level, working in partnership with NHS England and others to make health care and related supports more personalised.

Anna saw the opportunity to join the Coalition at the same time as she was coming to terms with her health condition and the impact it would have on her anticipated career pathway. She had a professional knowledge of the NHS, a need to use her skills and knowledge and a strong personal drive to improve things.

I wanted to help people. I also wanted to feel that I was still useful. The opportunity came at just the right time. I didn’t know what coproduction was but thought – I’ve got lived experience

Anna joined the Coalition and began to learn about personalised approaches to health and social care. She realised that her experience was a long way from personalised.

The system doesn’t look at the whole of me. At one point I had 7 consultants and none of them spoke to each other

Recently Anna became the Co-chair of the Coalition.

What helped?

Anna sees herself as determined with a need to be active, to contribute and find solutions to problems. These characteristics originally drove her to become a Dr and continue to drive her work with the Coalition. She also has skills which enable her to deliver her role well including professional and personal knowledge of health conditions and strong problem-solving skills.

Anna is paid a participation fee for the time that she gives to the Coalition, the gets the support that she needs to contribute, and the cost of her expenses are covered.

Through her work with the Coalition Anna has met people with experience who have shared their knowledge. Anna sees their support as key to the success with the Coalition.

I have met some amazing people, many of whom have given me great advice

Challenges

Getting around using public transport is a real challenge, as is finding accessible accommodation when travelling for meetings. Accessibility can also be an issue at venues with organisers who have invited disabled speakers, sometimes unaware of the physical barriers presented by their chosen venue

It is not easy being disabled and using public transport. I went to an event where the disabled toilets were upstairs. The only lift was too small for my chair. Other disabled speakers and I were forced to go over the road to Starbucks to use their toilet

Anna needs help to travel and carry out her role within the Coalition but does not get any extra hours built into her package of social care support. Systems are complicated and don’t link up well to enable Anna to do what she does.

Through the Coalition I am trying to make a positive difference to health and social care on a national level. On a personal, local level they are the ones that make it difficult!

Achievements and impact

The Coalition has been influential in the development of the Universal Personalised Care Model and its inclusion in the NHSE long term plan. It has found opportunities to influence at the highest level and Anna has played a key part in this. When the Coalition first started the level of work that was coproduced was limited. More recently this is much stronger and the voice of people with lived experience is key in all areas.

Contributing to the leadership of the Coalition has had a strong impact on Anna personally.

I have a sense of purpose. I have rebuilt my confidence and skills. It offers me a good challenge and I would miss it if I wasn’t involved.

The future

In the future Anna hopes to be in the same or a similar area of work

Chipping away at the bigger picture and trying to bring change in some way

She now feels knowledgeable and skilled in work around health and social care and coproduction.

I have learned about how this all works and am determined to help it move in the right direction

She is mindful that NHSE and other health organisations have a strong and evolving personalisation strategy but understands that they don’t always make the link with historical work on personalised approaches from a social care perspective.

I don’t want to see health bring in personalisation in a tokenistic way that is not doing things to help people live their lives their way’ I want to see real culture change and power sharing. I want change to be coproduced and able to make a positive difference to people’s lives