Patients are the best judge of NHS services, and we must enlist their help

There is growing recognition of the value of involving patients and the public in all aspects of health care. But to make patient involvement meaningful, it has to be fully embedded in NHS services and organisations. In 2015, we established our first strategic lay forum to work in partnership with senior staff to guide and oversee a strategic and systematic approach to patient and public involvement across the Trust. The forum is made up of 12 lay partners – patients, carers and local residents who are representative of our population but who are not there as formal representatives and can provide an external point of view on our plans – together with Trust staff directors from Imperial Health Charity and the lead on patient experience in research at Imperial College.

Mariam, 19, and John, 90, are members of the Trust’s strategic lay forum. Here they tell us how it’s helping to create change and how you can get involved:

How did you come to join the strategic lay forum?

Mariam: I got involved with the Trust a few years ago, when my younger sister got ill. She was unwell for a good while recovering from a stroke, and the staff at St Mary’s provided her with great support. Her consultant, Dr Bob Klaber, suggested my father and I use our experience in hospital to help teach junior doctors about working with patients – we became their mock patients!

I’m at university training to become a therapeutic radiographer right now – so it was really interesting to give feedback to the junior doctors about how they communicate with patients and their families. It's good to see that medicine is about so much more than clinical knowledge; it's about how you listen and contribute to conversations, how you are with your patients and being a genuinely attentive and caring person.

In March 2016, Dr Klaber suggested my dad and I attend a patient and public involvement event which was the beginning of the Trust developing its strategic patient involvement work. I found it interesting because, for once, I saw the NHS as more than just healthcare professionals making decisions that affected patients – patients could actually get involved. I really appreciate how the NHS is willing to take on new ideas and hear what we have to say.

John: I’ve been involved with the Trust for about five years, since before the strategic lay forum was established. I’ve been volunteering on and off for quite a part of my life. I’ve been a Samaritan, an advocate for older people and I’ve volunteered with Age UK. Patients are involved in so many services throughout this organisation, but there wasn’t always a central body to coordinate and cultivate the different activities. So in 2015, the Trust established a strategic lay forum to bring it all together and I became a member. That’s also how I had the pleasure of meeting Mariam!

What does the strategic lay forum do?

John: As a strategic group, we’re responsible for working with the leadership of the Trust to research, coordinate and develop opportunities for patients to get involved in the organisation in different ways. Our job is to ensure the Trust delivers its patient and public involvement strategy. It’s about making sure patients and the public can take an active role in operational and development projects at the Trust but also in shaping its longer term direction.

Lay partners join project groups to provide external perspectives and views and I think of being a lay partner as like being a critical friend. We’re there to support the Trust, but from time to time we say, “Are you sure this is the way patients want or need something to be?” As well as the 12 lay partners on the strategic lay forum, we currently have another 44 lay partner roles on project groups working on a wider range of issues, including improving waiting list management, the redevelopment of the St Mary's site and developing a proper wayfinding and signage approach.

For example, we regularly work with Trust staff to ensure policies, procedures and projects accommodate the unique needs of a variety of different people, from new patients to those who come to hospital often and know our hospitals well. We’re also very mindful of the wide diversity of patients in terms of language, backgrounds and culture.

About a year ago, we helped establish the patient communications reference group, which reviews Trust letters, leaflets and other communications with patients to ensure they are clear, accessible, and free of jargon. We put an offer out through our networks, website and social media and recruited 25 local people who now provide regular feedback and ideas on planned communications, primarily via email. The strategic lay forum also works with specific services at the Trust to support local approaches to increasing patient involvement – from improving feedback mechanisms, for example, to setting up patient groups that influence how services are delivered. It’s still early days, but we’re starting to become part of how the Trust operates.

You both bring very different perspectives to the strategic lay forum.

John: Dare I say we're on opposite ends of the age spectrum! I think breadth of age is important when it comes to patient and public involvement.

Mariam: I come from a Somali-Muslim family. I can't speak for the whole Somali-Muslim community here in London but, because our backgrounds, upbringing and culture are similar, I feel like I could possibly explain how they are feeling and maybe get more people from our community involved at the Trust. I don't know what it is, but some can seem shy about voicing their opinion. There's an attitude – just go to the doctor and take what they give you.

John: I think that's a fairly widespread attitude, and it's something we need to break down wherever we can.

You’ve both been lay partners for a little while now – what have you learned, and what have you achieved?

John: I've learned many things. I've developed a belief that the world can't be changed in one fell swoop. I think small steps, leading to a gradual transformation, is sensible. Doing what is practical, sensible and fundable. After all, a ladder is made up of small steps.

Mariam: That's very true! It’s important to tackle challenges in small, achievable steps. I’ve learned to be more confident. And I’m hoping to be able to encourage more people from my community to share their views as patients.

John: We’ve brought the principles of co-creation to the Trust. Now there’s an understanding that whatever you do, patients and the public need to be involved from the start to ensure they have a voice in every aspect of the Trust’s work. These are cultural changes for an organisation and cultural changes don’t happen overnight.

What do you like about being lay partners – what keeps you coming back?

Mariam: Lots of things! I feel like I'm very well looked-after. I was a bit scared at first, because I've never been part of a group like this. I was scared of saying something silly. But the members of the strategic lay forum are very welcoming, and I’ve become more confident speaking to everyone and contributing.

I also had the opportunity to speak at the Institute of Healthcare Improvement conference that the Trust hosted in May 2017. I shared my story and learned from the experiences of people from all around the world who are involved in shaping healthcare in their communities.

John: I think it's the people, for me, and contributing to the important work our doctors, nurses and other healthcare professionals do in the NHS.

But I have a selfish reason for doing this too, and I don't think it does any harm. Certainly as one gets older, finding something to do is enormously valuable. For me, the satisfaction is in trying to achieve something. I feel a certain amount of pride in trying to make a difference.

Finally, what would you say to someone who is thinking of getting involved at the Trust?

Mariam: Do it! There are so many different areas you can get involved in – the experience will be whatever you choose to make of it. If you’ve got something to say, know that you will be supported by the Trust and all the other people who are willing to speak up for patients. Just do it!

John: I'd say more or less the same! I'd ask: what sort of experiences have you had of the NHS? Have they been good experiences? If so, don't you want others to share that? If not, don't you want to play some part in helping to improve what is not so good? Because we can never expect everything to be right all the time. It will be good for your health, for your general well-being, and your feeling about the world. Why not?

Being a lay partner is just one of the ways to get involved at the Trust. There are also opportunities to join one of our reference or project groups, volunteer, fundraise and attend our events. There are also lots of ways to feed in your views, raise concerns or suggest ideas including PALS; the Friends and Family Test; NHS Choices – or talk directly to your clinicians.

Email to learn more about lay partnership or join an involvement programme.

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