PPI in practice

Hosted by the West of England AHSN as part of our innovation for quality improvement work, the second PPI (public and patient involvement) in Practice event took place last month.

Drawing on the expertise of People in Health West of England, the network aims to strengthen and build good practice in PPI throughout the region. It brings together PPI professionals (in service improvement as well as research) and lay reps from clinical commissioning groups (CCGs), trusts and health service providers from around the West of England region.

The format of the event follows the ‘Dilemma Café’ approach where topics are proposed by individuals looking for advice and ideas. After a short presentation of the dilemma, the group then break into smaller groups to discuss the topic of their choice.

Dilemmas brought to the group so far include:

  • How to involve the public in co-commissioning?
  • How to influence the Sustainability and Transformation Plans?
  • What does good look like?
  • How can we improve our PPI engagement forums?

Those who attended have been enthusiastic about having the space to benchmark their own performance and share good practice. “It’s nice to hear what other people are doing and know that we aren’t doing too badly,” said one person leading on PPI for their CCG.

There is also the opportunity to learn techniques and ideas from others and have a safe space in which to discuss any difficulties people might be having. “I like the mixture of non-professionals and professionals coming together,” said a lay rep. “It makes it really interesting.”

At the moment the group is limiting its scope to those with a responsibility for PPI, either as a lay rep on a board or in a professional capacity, in order to ensure the meetings meet the need for peer support and learning that might otherwise be missing for lay reps and PPI professionals.

For further information contact Hildegard Dumper, Patient and Public Involvement Manager, at hildegard.dumper@weahsn.net.

The 100,000 Genomes Project: ensuring the public and patient voice is heard

Our Public & Patient Involvement (PPI) Manager, Hildegard Dumper recently took part in a consultation event focusing on the issue of informed consent for people signing up to the 100,000 Genomes Project. She shares her thoughts and reflections…

Genomics England in conjunction with NHS England are running a series of consultations is running series of consultations around the country on changes being considered in order to make it easier for people agreeing to take part in the project. The aim is to do so without compromising the necessarily rigorous framework for informed consent.

There are currently 13 GMCs in the UK, including one in the West of England, working with Genomics England to deliver the 100,000 Genomes Project, which is the largest national sequencing project of its kind in the world.

100,000 genomes from NHS patients with rare diseases and cancer will be sequenced and analysed, to better understand the genetic causes of these diseases.

The West of England AHSN is one of the partners in the West of England Genomic Medicine Centre, leading on public and patient involvement (PPI). I was invited to join a consultation workshop in Taunton, hosted by the South West AHSN, along with Adele Webb, a public contributor on both our AHSN board and the West of England Genomic Medicine Centre’s board.

So on a sunny Friday morning, Adele and I met at Taunton train station to share a taxi to the Musgrove Hospital Academy. There we met up with the two researchers running the evaluation from Imperial College London, as well as three more public contributors from the South West.

Markella Boudioni, a researcher from NIHR Imperial Biomedical Research Centre, Patient Experience Research Centre and West London Genomic Medicine Centre explained the background to the evaluation, taking us through the issues and key questions they were trying to address.

A considerable amount of time was spent on the issue of patients receiving information about other conditions that might be discovered unexpectedly, whether and how we should invite people to opt in or out of that. This opened up a particularly thoughtful discussion about the huge impact on families of sharing the information that an inherited condition was present in the family and its implications for the future. We were able to bring to this our personal experiences.

It clearly is in Genomics England’s interest to understand this, as one way or another there are clear resource implications. The current paperwork is considerable but it is difficult to know how they might get around some of the questions around consent that need to be asked.

We were asked to review current patient information material, including consent forms for both cancer and rare disorders and opt in and out forms.  The discussion ranged over the style of written material for patients, how to mitigate the bulk of text and the use of plain and accessible language.

We also covered different methods of presenting information in order to be inclusive – offering alternatives to online access, for example. In considering recruitment, we looked at the key points in the patient pathway and how recruitment might be more effectively embedded in the process, together with different PR approaches to encourage take-up.

Markella was very skilful at pursuing clarification, channelling our thinking on key issues and in encouraging suggestions and improvements to the patient approach.

The focus group was clearly helping to inform the moves to improve the material being given out. It felt like a very practical and positive contribution towards the patient experience and pathway, especially when we were invited to propose and explore solutions.

Both Adele and I found it extremely useful to have been part of the consultation as it helped us understand some of the challenges faced by NHS England in rolling this out and gave us a deeper appreciation of some of the ethical dilemmas associated with the project.

Stephen’s story

In partnership with Sirona Care & Health and North Bristol NHS Trust, our Human Factors programme offers tailored training to support staff working in community health settings. A toolkit has been developed, supported by face-to-face train-the-trainer sessions and collaborative events for shared learning and problem solving.

Stephen Early is a service user and volunteer with Sirona who has been actively involved in the development of this training programme, from designing scenarios to reflect realistic situations that staff might encounter to giving talks at staff inductions.

This is Stephen’s story, introduced by Karen Gleave, Project Lead for Sirona Care & Health.

Stephen is a service user living in one of our Extra Care Services, and currently is a volunteer with Sirona Care & Health and sits on the service user panel/forum.

I met Stephen just over a year ago when I approached members of the panel about working with me to provide a service user’s perspective for the Sirona support worker induction on what it is like to receive a service.

Once Stephen started it became quickly apparent that he was a “natural” talking with people and able to get his message across about how important communication and human factors are when supporting people. Stephen is able to bring the scenarios alive for the audience, has made people laugh and at times brought people to tears.

Stephen is a very inspirational person and has touched the lives of many. The feedback we receive after each induction is really very positive…

quotes

It really shows the great value that service users can make to organisations and how they can help to shape future services.

Stephen’s story

Unfortunately I’ve caught pneumonia about six or seven times, and on about four or five occasions I’ve been took into hospital…

… because I was living by myself I’ve had problems with eating for about six years.

… one of the things they do here is try and make me eat and drink so they make me a sandwich now and then, or every time they come in, no matter what they’re going to do they always make me a cup of tea and put it in front of me, and I feel if they’ve made me a cup of tea, then I should drink it, even thought I don’t feel thirsty if that makes sense, and when I go up to Karen’s they the same, everyone does the same. “Tea Steve!” and it’s great.

So one day the doorbell went and the lady came in and she was a support worker. I think she was, I’m not sure now. She came in and said [grunting] “Alright.”

Well, straight away you know that you were not going to have a conversation with this lady about anything and the worst thing is that these sort of five, ten minutes ones which you might get spread out between the day, maybe three times, maybe four, not sure, all depends on what your needs are, are very important to everyone because it’s communication. It’s talking to someone.

And loneliness in these sort of places is quite bad actually because you know it has an effect on them and on their health as well. Because if you’re feeling down, you’re more likely I feel to get things wrong with you and depressed and things like that, so it’s quite important when people come in that they’re a bit… and say things. So when she came in I knew straight away I wasn’t going to have a conversation with her.

Now if I was feeling a bit unwell or anything like that, or had troubles or things, I wouldn’t have talked to her about it because I knew she wasn’t in the right mood to receive any sort of information. And then she came and said, “Got to make you a drink.” Now “got to”, so that hit me home that “got to” is not “Oh, I’m going to make you a…”, “Got to make you a drink. Can’t understand why you can’t do it yourself.” That was a little whisper underneath the voice.

And then the sandwiches… “What do you want in your sandwiches?” I said, “Well anything please” and then again I heard her say, “Can’t understand why you can’t do it yourself” and then she left. And as soon as she left I got up and I chucked the tea down the sink, and I put her sandwiches in the bin because I wasn’t going to eat or drink anything from someone who didn’t’ want to do anything for me and it made me feel really bad.

So that went on for about six or seven weeks. I stopped taking food, and when they did make me food I just tipped in the bin, and the drinks, because I felt like no one wanted to do it and they didn’t understand me. They didn’t’ understand my problems. They just thought I was lazy. So it didn’t matter if they came in happy or joyful, I would still do it. That was quite a bad experience.

And then a good experience was one lady come to see me, well lots of them. And they come in and ring the bell [brightly] “Hi Steve!” Straight away you know you’re going to have a positive talk to that person and positive reaction. And you’re going to say to that person if there is something troubling you, you’re going to mention it to them, you know, “Oh I don’t feel too good today… Oh I’ve got this problem” or whatever.

And the other thing is they come in and say, “What have you been up to today? What’s been going on? What are you going to do this afternoon?” All them little things, you know, it helps the conversation to go through and it is brilliant. “Oh,” she said, “Is it two sugars, Steve, innit? It’s two innit?” Them little things, it’s not like “Oh, I gotta make you a cup of tea” or anything like that. It’s “I’m going to put in two sugars.” Some don’t even talk about it they just do it and bring it out and put on the table which is brilliant so it’s them sort of things…

…unfortunately the people, some of the residents we have here, I call them my family because they are they’re all my family, and I tell them that. Anyway, they’ve got problems some of them and some of them suffer with memory loss, Alzheimer’s, so they’re not able and some of them can’t speak properly and they cannot relay to the support workers what it means, what they mean to us and they mean everything.

I call all of my support workers “my ladies” because that’s what they are. They’re my ladies. And they’re here… if it wasn’t for them I wouldn’t be here, they mean so much. Doesn’t matter if they come in and make me a cup of tea or just the simplest of things like help me taking off my shoes. My legs swell up around about half past two in the afternoon. They come in and take my shoes off and they always make me a cup of tea when they do it, and they have a little chat whilst they do it, and it means so much.

And I’m able when I go on my induction days to translate to them what they actually mean to people like me and the rest of the residents what they’re doing. Their job’s just as much important as a doctor or anyone like that because they’re doing something to help and they’re not only helping in the sense of doing something like giving someone tablets at the right time or doing some domestic or whatever or making sure someone eats. They’re actually talking to that person, which is fantastic, which makes them feel good.

… if I can hit that one person at induction day and she stays doing caring for maybe ten years? So she might see thousands and thousands of people on her journey through her career. If she carries that through, with all of them, what a magnificent difference that’s going to make! So that’s how I think of it.

Stephen was the winner of Sirona Volunteer of the Year 2015 for his work on the project:

Five things to consider before embarking on co-production

What does co-production actually mean in practice? asks Hildegard Dumper, the West of England AHSN’s Patient and Public Involvement Manager.

You might have noticed there are a number of buzz words currently flying around, the most common starting with the prefix ‘co’: co-produce, co-design and co-create. Even NHS England talks about co-design in its Five Year Forward View. I thought I would share with you my understanding about these ‘co’ words, and what they mean for us.

The first thing we need to understand is that all these ‘co’ words describe an approach to working with the public that regards each individual, regardless of their role, as having a valuable contribution to make. Central to this approach are principles of reciprocity and equality. We at the West of England AHSN have committed ourselves to being guided by these principles and working in a co-produced way.

There are a number of definitions of co-production. The National Co-production Critical Friends defines it as…

‘a relationship where professionals and citizens share power to plan and deliver support together, recognising that both have vital contributions to make in order to improve quality of life for people and communities.’

The New Economic Foundation / NESTA suggests co-production is…

‘delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change.’

 NHS England’s Citizen’s Assembly describes co-production as…

‘service users, or the public in general, working in partnership with service providers or commissioners to jointly make decisions.’

So what does this actually mean for us in practice? There are a number of things that need to be considered when deciding to work in a co-produced way.

1. What’s in scope?

Decide which pieces of work are suitable for co-production and what can and cannot be achieved by involving people in this way.

2. Identify resources

Consider what resources you have available. Think about:

  • Staffing – who will be managing the project?
  • Funding – have you the resources to pay travel expenses and/or people’s time? See our guide to paying expenses.
  • Timing – involving people takes longer. What is your time-line?
  • Identifying suitable people – what kind of selection process would be fair and appropriate?

3. Produce role descriptions

Develop and agree with your public contributors a role description which clearly states the time commitment expected from them, the length of their involvement and payment details (a template role description is available).

4. Create a level playing field

Identify where power imbalances can exist and take steps to minimise them. For example, don’t have meetings at a time that excludes public contributors from attending or from taking part in the background thinking and development of a project.

5. Value difference

Work with a wide range of people, using different people for different pieces of work.

It has been shown that where genuine co-production has taken place, it can deliver better outcomes, support better use of scarce resources and improve the well-being of those involved – clearly a win/win situation for the West of England AHSN.

Patient voice at the heart of new Genomic Medicine Centre

In January members of the public joined clinicians and other healthcare professionals to find out more about the new West of England Genomic Medicine Centre, which was announced in December.

The centre forms  part of the three-year national 100,000 Genomes programme to transform diagnosis and treatment for patients with cancer and rare diseases.

The event started with an introduction to the ambitions of the West of England Genomic Medicine Centre by Clinical Director, Dr Andrew Mumford from University Hospitals Bristol. Our aim is to complete whole genome sequencing of 4,650 samples from patients and their families in the region, and to integrate whole genome sequencing into standard clinical care pathways. You can see Andrew’s presentation here.

There was then a lively discussion about how we can best engage people in getting involved with the work of the Genomic Medicine Centre, raise public awareness and support, and gather feedback from service users about their experience so we can improve and develop how we do things.

Adele Webb from Gloucestershire was one of the public contributors who attended the event. Adele said, “It was so good to be involved – I thought there was an excellent atmosphere, particularly one without barriers.

“There was broad and open dialogue between professionals, patients and public contributors, although we could have done with a few more members of the public. I really hope it’s possible to get all those people back together not too far down the line, along with the others who weren’t able to attend. There was tremendous potential there.”

Hildegard Dumper, Patient & Public Involvement Manager for the West of England AHSN, added, “I was thrilled to be part of what I hope will be the beginnings of a dialogue between the Genomic Medicine Centre and patients and the public.

“The discussion we had was open and honest and it was generally agreed that it was important that the experiences of patients and the public help to shape the project as it gets rolled out. We are still working some of this out, so anyone who would like to be involved should get in touch.”

Find out more about the West of England Genomic Medicine Centre here or email ubh-tr.wegmc@nhs.net.

 

Patients set to benefit from new Genomic Medicine Centre in the West of England

Patients in the West of England are set to benefit from a new NHS Genomic Medicine Centre based in Bristol.

A partnership made up of NHS provider organisations in Bristol, Bath, Cheltenham and Gloucestershire, universities, the West of England AHSN, NHS commissioners and Health Education South West has been designated the West of England NHS Genomic Medicine Centre (WEGMC).

The centre will be part of the three-year project launched by the Prime Minister launched by the Prime Minister, to transform diagnosis and treatment for patients with cancer and rare diseases.

This involves collecting and decoding 100,000 human genomes – complete sets of people’s genes – that will enable scientists and doctors to understand more about specific conditions. It could allow personalisation of drugs and other treatments to specific genetic variants.

Clinicians from the hospitals involved will recruit potentially eligible patients. Then patients choosing to be involved will take part in a test which will then be processed in a lab at Southmead Hospital, before being sent nationally for sequencing.

Some of the patients involved could benefit from a quicker conclusive diagnosis for a rare and inherited disease or cancer because treatment may be targeted at a particular genetic change.

Patients at the heart of the project

Life Sciences Minister George Freeman MP said, “The opening of this centre, as part of our revolutionary 100,000 Genomes Project to sequence the genomes of NHS patients with cancer and rare diseases, underlines the UK’s position as a world leader in 21st century medicine.

“Patients are at the heart of the project. That’s why we have chosen NHS sites like this to sequence DNA on an unprecedented scale, which will bring better treatments to people with rare diseases and cancer in the West of England.”

Transformative possibilities

Tony Gallagher, Chair of WEGMC, said “This is an important step forward for patients and the development of future treatments in the West of England. Working together we have teams of dedicated and experienced doctors, nurses, counsellors, scientists, managers, commissioners and academics who are committed to realising the transformative possibilities that genomic medicine offers to patients in our area.”

Creating ground-breaking discoveries

Caroline Gamlin, NHS England South West Medical Director, said: “This is a huge tribute to the quality of our medical science in the west. Our local doctors will help to create ground-breaking discoveries about diseases, predict who is susceptible and design personalised treatments to tackle them.”

The national project to sequence 100,000 genomes was announced by the Prime Minister in 2012 in a bid to transform diagnosis and treatment for patients with cancer and rare diseases in the fast-emerging field of genomic medicine. NHS England established 11 NHS Genomic Medicine Centres (GMCs) in 2014. A year on, two more GMCs have been announced – one for the West of England and the second in Yorkshire and Humber.

An individualised approach to patient care

Professor Ruth Newbury-Ecob is a leading member of the West of England partnership. She works in the Clinical Genetics Service at University Hospitals Bristol which provides genetic services for Bristol, Bath Gloucestershire and Somerset. Specialising in rare diseases including inherited cardiac conditions, she works with colleagues  at the Bristol Royal Hospital for Children and the Bristol Heart Institute to provide specialist multidisciplinary care She works closely with the Regional Genetics Laboratory at North Bristol NHS Trust to develop new genetic testing, translating research findings into NHS services for patients across the UK.

She said, “Genomics has the potential to transform healthcare by developing a more tailored individualised approach to patient care and through better screening and targeting treatments to prevent development of diseases such as cancer and heart disease. The West of England partnership has brought together multiple interested parties for the first time to bring about this wonderful transformation in healthcare.”

Humbling and inspiring

Patients are involved in planning the new service. Deborah Evans, Managing Director of the West of England AHSN, said, “In recent weeks I’ve been involved in interviews with people locally who have experienced rare diseases or cancer and their carers, and we have gathered very rich and useful insights that will help us plan our new services.

“It has been humbling and inspiring to hear first-hand these stories from people who, when faced with cancer or a rare familial disease, have not only coped with extraordinary life-changing challenges for themselves or their families, but still have the commitment to contribute more for other people through this research which will play such an important role in the future of medicine and treatment.”

Tara Mistry from Bristol said: “As someone with personal experience of cancer, with a diagnosis before the age of 40 and with two young daughters having grown up under the shadow of their mother’s surgery and subsequent treatments, this news of the Genomic Medicine Centre for the West of England is just fantastic.

“I’m so pleased that I and other patients have been involved in helping design aspects of this new service from a patient perspective because we have enormous interest in making this work for the prevention of illness in our children and communities. It’s so good to feel that this service can help target treatments to individuals and so make us less sick while being treated and hopefully eliminate the disease altogether – so my daughters and others may not have to go through this in their lives. I look forward to being more involved as this project unfolds.”

Vital research

Adele Webb has also been involved in the patient and carer interviews. She said: “I am delighted that the West of England has been successful in its application to join the 100,000 Genome Project. This is our chance to contribute to an initiative that has the potential to impact not only on the health of people across the world, but also for future generations of our families.  Since I have personal experience of a rare disorder within my family, I  am particularly heartened to know that we can contribute towards the research that is so vital.”

Professor Aniko Varadi from the University of the West of England in Bristol will lead the work in education and training. She said, “It is critical that the workforce in the NHS is educated and trained to ensure the effective delivery of genomic technologies. The education and training programme supports the delivery of the 100,000 Genomes Project but it goes well beyond that. The ultimate aim is that the next generation of clinicians, scientists and multi-disciplinary healthcare teams have the awareness, knowledge and capacity to apply genomics to clinical practice.”

 

Putting patients at the heart of Quality Improvement

How can we work collaboratively with patients and carers to co-produce and transform clinical services? This was the focus of our latest West of England Academy masterclass, hosted by our colleagues at Royal United Hospitals Bath.

The 41 participants from our member organisations were joined by three inspirational speakers for a stimulating and interactive workshop in which they got to practice using some of the resources from the Kings Fund’s Experience-based Co-design toolkit.

Our three speakers were:

Annie Laverty, Director of Patient Experience at Northumbria Healthcare NHS Trust

Annie discussed how her organisation has put patient experience at the core of their approach to improving care, with positive results in patient satisfaction and staff morale. Attendees were particularly interested in how patient feedback is collected in the morning and delivered to staff directly that afternoon, in a way that encourages staff members to actively use the feedback to improve the way they and their team mates deliver care.

Suzie Bailey, Head of Development at Monitor

Suzie was able to explain how Quality Improvement approaches are being used by the regulator to increase the range of support they are able to provide to front line care providers. In a previous job, Suzie played an important role in the development of the Sheffield Microsystems Coaching Academy at Sheffield Health and Social Care NHS Foundation Trust, and Sheffield Children’s NHS Foundation Trust, in partnership with the Dartmouth Institute Microsystem Academy from the USA, and was able to offer some practical anecdotes from her work there.

Anna Burhouse, Director of Quality at the West of England AHSN

As well as working for the AHSN, Anna still practices clinically as a Child and Adolescent Psychotherapist.  She also works on a voluntary basis to help develop the Severn & Wye Recovery College in Gloucestershire, which was set up by the 2gether Trust in 2013 to provide a new way to support people living with mental health problems. Anna shared personal stories about some of the people they had helped, including  video clips to emphasise the success of the approach.

In the afternoon, delegates were introduced to the Experience-based Co-design toolkit, working in large groups to consider what observations they might make about their working environment if they were a patient, carer or visitor, with a view to making the environment more attractive for guests. They then worked in small groups to practice interviewing patients in a way that would support their involvement in co-design meetings between clinicians and patients.

Throughout the day there was an extremely positive vibe within the room. The post-event feedback reflected this, with comments on the “inspirational speakers” and being surprised at “how real” the exercises were, as well  “how well organised” the event was.

For more information, contact:

David Evans, QI Programme Manager
0117 900 2249
david.evans@weahsn.net

For details of forthcoming events, check out our Events section. Read the evaluation report here.

Effective patient and public involvement takes time

Developing effective patient and public involvement (PPI) takes time and commitment, says the West of England AHSN’s Patient and Public Involvement Manager, Hildegard Dumper.

Two events in the last week have reminded me that the development of good public involvement takes time.

At a panel discussion on cities, health, people and leadership at the Festival of the Future City last week, Professor David Evans pointed out that NIHR INVOLVE is now 20 years old. INVOLVE was set up by the National Institute for Health Research (NIHR) to support public involvement in the NHS, public health and social care research. It is now well established as the key body to drive forward and support good practice in public involvement in research, providing the benchmark for other areas of health and social care.

In the context of an NHS that has gone through several major structural changes in the past few years, this consistency is a major achievement.

I was reminded again how the development of a truly patient and people led health service takes time at the People in Health West of England Awayday this week. During an exercise reflecting on our achievements over the past year, we realised that the idea for a joint PPI initiative was first mooted in 2008, seven years ago. This evolved first into People & Research West of England, before being re-launched as People in Health West of England (PHWE) in 2014.

Throughout this time the network has been chaired by Nicky Williams, Deputy Director of Research, North Bristol NHS Trust. Nicky is now leaving us to take on the post of National Director of Support & Delivery for Health And Social Care Research for Wales.

Nicky told me: “It has been a pleasure to co-chair the strategy group with Cathy Rice over the last few years and I look forward to hearing all about the work of PHWE in the future. I’m really proud of how PHWE has grown from the little seed of an idea that we first discussed in 2008 – a real credit to the commitment of the public contributors and staff involved.”