We are all the NHS

We all have our part to play. 

We love the NHS, it is a national institution. It’s free at the point of use, and was one of the things we celebrated in the opening ceremony of the 2012 Olympics, it’s part of what defines us as a nation. However, there is a temptation to consider the NHS to be the people that look after us. The doctors, nurses, paramedics or managers. It is the teams toiling hard to battle down waiting lists and offer us the latest medications, operations or therapies. This can be reassuring, making us feel safe, that others have our back, if things go wrong. However, we think that the NHS of the future, will need to involve us all. 

We believe that participation is the key to a world class NHS. This is not because the NHS is straining to keep up with demand (even though it is), but because when people join in the system works much better. People do better for themselves, the staff enjoy their work more, and the NHS funds go much further. 

I’ll describe participation at 3 ‘levels’ - Self Management, Peer Support and Co-Production. You could consider self-management as the bedrock of involvement, where you participate in the NHS by proactively looking after yourself. This can be to keep yourself well, creating good health and preventing illness, or to actively manage long term conditions you live with. The next level of peer support is where you offer your help to support other people. Often this is tapping into the lived experience you have.  Many people are ‘experts by experience’. The 3rd level is where you contribute your views and insights into how the NHS is organised and delivered. Again, this can be through sharing your lived experience of using services, but it maybe applying other skills and insights you have, perhaps as a carer, a professional yourself, or as an active member of your local community. 

In writing this as a GP I do appreciate that we, as professionals, have an important role in ensuring people are able to participate. This means us using skills to make it easier for people to participate, valuing the part people play, as much as we value the roles of the paid staff. Often this involves us ‘stepping back’ from thinking we have all the answers and solutions, and recognising we do our jobs much better in the NHS, if we enable participation as a core part of what we do. 

You can join in at all 3 levels, or different ones at different times. I’m going to go on to give examples of each of these 3 levels, to hopefully bring them to life in your mind. These stories are based on my experiences of when participation is used well.  I have seen it happen again and again in my work in the NHS. They illustrate what we could achieve if we made this way of working, ‘business as usual’. In describing these 3 levels I hope you will understand how we can all contribute to the NHS. We are all the NHS 

Self-management.  

Barry is a retired builder. He gave up 4 years ago because his knees where just getting too painful. Anyway, he had built up a big enough pension and some savings. He wanted to enjoy life with his wife. He smokes and had started to find his breathing was limiting his walking too. With the pain in his knees, and his increasing breathlessness he slipped into a pattern of not doing much. Driving to the club for a few pints at lunchtime, and he had put on a few stone. He wasn’t doing what he had hoped and was getting pretty down in the dumps. 

The practice nurse told him he had COPD (chronic lung disease), he told him that he had to give up smoking or it would get worse. He also needed to lose weight. He offered antidepressants to pick him up. Barry didn’t like the sound of any of this, he’s not a pill taker, and enjoys his smoking. He takes the inhalers he is prescribed especially the blue reliever, he ‘sucks’ on that a lot, although it makes him a bit shaky, and his heartbeat rushes. 

Out of frustration the nurse suggested Barry see the new health coach. They had longer to talk. The Coach listened. Together they established Barry’s frustrations and tuned him back into the things that really mattered to him, being fit enough to play football with the grand kids, keep taking them to matches, and do some travelling with his wife. 

Barry decided he had to make some changes. Together with the coach they agreed his first step was to get walking a bit. He was worried about his knees but was surprised that by gradually building up the pains didn’t get worse. In fact, they felt a bit better. The coach talked about an ‘anti- inflammatory diet’, and together than researched some changes that helped his knees feel even better. Getting on a bit of roll, he decided it was time to quit smoking. He’d always found it very hard; he saw himself as a smoker. But the coach supported him to tune into his reasons and focus on his wife and grandkids. 

Now 6 months down the line since his last session with the coach, Barry is in a much better place. He managed to give up smoking and built up his walking, so he walks to the club now. After a chat with a link worker, he joined a walking football group, which has made it much easier to maintain his activity levels, he really enjoys the banter. He’s planned a cruise with his wife and is taking his grandsons to see their team play football this Saturday. But he’ll not have a pie because he knows the foods that keep him well now. He’s pleased he didn’t need those antidepressants, and very rarely uses his blue inhaler anymore. 

Peer support 

Farzana is a busy mum. She has 3 young kids, elderly grandparents next door, and her husband works night shifts. She always eats on the go, usually with the kids, and then late at night before her husband goes to work. She has put on a lot of weight. It bothers her at times, but she doesn’t have much time to think of herself, she is always looking after everyone else.  She used to enjoy cooking but doesn’t have much time for it now. 

Recently she has had a blood test and been told she has prediabetes. She has been told she must lose weight and needs to start taking tablets for her blood pressure. She probably needs a tablet for cholesterol and sugar levels too, but ‘one step at a time’, says the doctor. 

Farzana’s sister tells her about a support group she has heard about at the local community centre, aimed at women living with diabetes and prediabetes. The next group is starting next week. It’s 1-3 pm. It feels like a big time commitment but fits in before school pick up. Her recent diagnosis has worried her, so she goes. She meets 7 other ladies just like her. They all live locally, and Farzana is amazed about how they are all coping with similar stresses and strains. The group is facilitated by a link worker and an expert patient, but the ladies do most of the talking. This first session is mostly getting to know each other, they look a little at what prediabetes and type 2 diabetes are (none of them really understood what they’d been told), and agree to meet in 2 weeks again. 

Farzana looks forward to the next session. The facilitator has asked them to look at a couple of websites to help them learn more. She has become interested in what a low carbohydrate diet is. 

As a group they start to gel, Farzana feels she has made new friends. Over the coming few months they meet regularly, and a few even exchange numbers and set up a what’s app group. They learn together and support each other to make changes to their diet. It’s tricky at times, but they agree to text each other when the going is tough. 

1 Year on Farzana has lost 2 stone in weight. She feels much better about herself. She has been going to a Zumba class, which she never thought she’d do! She has stopped the blood pressure tablets (in truth she never really started them), and the GP tells her she doesn’t need any tablets now (she seems quite surprised, but is very pleased with her). 

Farzana is so impressed with the power of the group she has volunteered to help out with a new group starting next month. She will help the facilitator and share the story about her progress. She thinks staying involved will help her stay on track too. 

Co-production 

Georgia has 2 children. Her youngest is now just starting at school. What a relief. It has been a very difficult few years, living with severe depression. Georgia is trained as an occupational therapist, she loved her job, although it was always stressful juggling family life and the emotional demands of her job. After Jake was born she had post-natal depression. Medication helped and she got through it, and her husband was very supportive. But after Matilda was born it was a lot worse. The medication didn’t seem to help as much and she had some really tough times. There were times when she was hearing voices, and at one point she took an overdose of sleeping tablets, she genuinely didn’t want to wake up. She couldn’t shake the feeling that she was letting her family down and was a useless mum. 

Georgia’s health visitor team where fantastic, and the community mental health team supported her with talking sessions and medication. But at times support was a little disjointed. There were some long waits for psychotherapy, and she thought she’d been forgotten. The GP practice was always good at offering her appointments, but she rarely saw the same GP twice.  Matilda was a handful, and those 5 years where really tough. 

One of the things that has really helped was being involved in a co-production group. The Community mental health team ran a ‘listening event’ a year ago, to hear from people who had been seen in the service. Georgia had fed back about her experiences, the things that had worked well, and those that hadn’t. It had felt good to feel useful again, and the team had really valued her opinions. She had joined in a set of regular reviews of how the community mental health team operates, and together they had made some changes. They had started regular support calls to people on long waiting lists, inviting them to a peer support group. Georgia knew this would have really helped her and was pleased they had actioned her suggestions. Now Matilda has started school Georgia might even help out with the peer support sessions. 

These are not the only ways people can join in with the NHS, people volunteer and work in all sorts of roles, large and small, often informally and barely noticeable. But we think our NHS, and indeed our communities will grow so much stronger, and work much better if as many of us participate as possible, in some way. It should be core to how the NHS works, we are all the NHS