My AHSN Connection – Tony Watkin

Tony Watkin is Patient and Public Involvement Lead at University Hospitals Bristol NHS Foundation Trust. Here he writes about how the West of England AHSN helped his team to develop a group of patient and public advocates who now help shape health services in the West of England.

I have worked with the AHSN since the early days of People in Health West of England (PHWE). We’ve all spent time trying to figure out the best way to give patients and the public a voice in the development and management of health services in the West of England.

With the support of the AHSN we joined up with partners at North Bristol NHS Trust and Bristol Community Health and, with an external facilitator, worked through how to train and support patients who wanted to take on an advocacy role.

Watching the AHSN pull together a team of public contributors inspired us and others to have the confidence to recruit and develop our own Patient and Community Leadership Programme. We learned from each other’s experiences and gained confidence to develop our work and approach. Pulling together 16 diverse individuals, training and developing them into effective Healthcare Change Makers has been a big leap for us all.

Where the AHSN has been so effective is at working across the system and bringing people together to provide mutual learning and support – even linking us up with other AHSNs who had valuable experiences to share.

Not only have we managed to recruit and engage patient leaders, we are also working together to advance thinking in the area. Traditional patient involvement can centre on simply harvesting information. Now we are moving to actively involving patients as leaders working collaboratively in designing change. Again, the AHSN is leading the way, and helping to provide a context for the rest of us to operate in.

This story is a highlight from our 2017/18 annual review: joining the dots to healthcare innovation. Check out the full review here.

The Usual Suspects: ways to widen involvement in service improvement

Hildegard Dumper, West of England AHSN PPI Manager, reflects on ways to widen involvement and participation in service improvement.

This story is a composite drawn from real events with names and identifiable features changed.

Pamela came out of the COPD Steering Group meeting the other day feeling really upset, and determined to leave the project. One of the clinicians on the steering group had asked about increasing the number of public contributors on the group. He said that there was a need to make sure patient reps were more diverse and we needed to avoid ‘the usual suspects’. By this he indicated he meant ‘white, middle-aged and retired’ which of course is what Pamela is. Debbie, the project manager noticed she looked upset and asked her what was troubling her. When Pamela told her, Debbie tried to reassure her that she was still a valued member of the group.

However, the experience got Pamela thinking. She approached Debbie and asked her if she was willing for Pamela to look into this. They agreed that Pamela would draw up a plan for how they could engage with a more diverse group of people suffering from COPD. She would share it with Debbie and take this on in a voluntary capacity, claiming for expenses. The plan included the need to have a discussion with the advisory group about what was meant by being representative – the demographics of the population of the area served, or users of the services. Or was it just different voices they needed round the table. In which case they could promote the role amongst users of the service and encourage interested people to apply. It was felt that all three factors were of importance.

Drawing on information from public health, it was identified that COPD was something that affected the population they served in different ways. Communities from a number of different ethnic and socio-economic backgrounds were heavy smokers and at risk of COPD. Pamela identified visiting three different communities in the region that reflected this range (Somali, Polish, deprived white). She contacted someone who Debbie knew in public health and got the names of the health ambassadors (in different regions they are known by different names) who had contact with these different communities.

She contacted them and it was suggested she attended one of the team meetings that were held monthly. She could then explain to the team what she was trying to do and get their advice. The public heath ambassadors were very encouraging, but pointed out that the communities she was targeting were mainly people who were struggling with their own challenges related to language, surviving in a different culture and the day to day challenges of living with poverty. It would be difficult to find people with the practical wherewithal and emotional space to contribute what was needed at a strategic level to the development of a project. However, they told her about a number of community events and encouraged her to attend so that she could meet people and identify people who may be interested.

Some months later, Pamela went back to Debbie with a three point proposal. She suggested that an extra patient rep be identified from users of the service interested in becoming a member of the steering group. Having two lay reps is seen as good practice as it takes the pressure off one person having to speak for all lay people, and offers a different viewpoints being heard. Pamela has also got to know the health ambassadors. One of them has shown a particular interest in the service and has good access to inner city communities. Pamela suggests inviting her to be part of the steering group so she can act as a conduit to some of the affected communities. Lastly, Pamela suggests they run a series of road shows where members of the steering group attend local community events to talk to those attending about the service and how it can be improved. This would require a big time commitment which may not see any immediate impact, but would be the start of forming a relationship with the communities they want to reach.

It was a learning experience for all involved.

  • For the clinicians in the steering group, they realised that different methods were needed to communicate with different groups of people.
  • Another key point was that it takes time to build up the relationships needed to identify the right people.
  • For the health ambassadors, they appreciated the direct link with clinicians and the relationships that developed as a result.
  • The experience also enhanced their knowledge and understanding of the pressures on the services helping them to manage the expectations of the communities they worked with.
  • The communities valued the fact that people were listening to them and wanting to understand their experiences
  • They themselves had a deeper understanding of how things worked and were able to have a more realistic expectation of health services and their role in managing their condition


How to achieve a successful working relationship with public contributors

As with any member of our team, public contributors need to be properly valued and respected for the role they play in shaping and delivering our work, and need to be effectively managed. Here Hildegard Dumper draws on her professional experience to share her tips on how to achieve a successful working relationship with public contributors.

Here at the West of England AHSN we work with a wonderful group of individuals we call public contributors (also known as lay representatives, experts by experience and patient reps). Selected from people who have expressed an interest in our work with the regional healthcare community, their role is to provide the much valued voice of a critical friend, asking the questions that need to be asked and reflecting back to us things we hadn’t thought of.

The whole system works well but we have learnt that this is dependent on some essential ingredients.

Because of our experience in this area, I occasionally get asked by colleagues from other organisations to mediate between themselves and their public contributors when there has been a breakdown in the relationship. Over time, some common themes have emerged, which I thought I would share in case others find these insights useful.

I’ve chosen to illustrate these themes in the form of a story; a composite drawn from real events with names and identifiable features changed.

Pamela contributes as a member of the public to a project looking to improve health services for people with chronic obstructive pulmonary disease (COPD). She was invited to join the project after attending a public meeting to hear the views of users of existing services and their families. Pamela’s husband had recently died of a COPD related condition and she was keen to contribute her ideas based on her experience of caring for him through his illness.

The meeting was held one morning in a community hall near to where Pamela lives. There were about six people or so there who, like Pamela, were retired. The facilitator seemed unused to running such a group. There were no refreshments and no introductions, so Pamela found the meeting quite awkward. However, she is a retired teacher and very confident in social situations. This is perhaps why, at the end of the meeting, she was invited to join the project steering group.

Pamela was very excited to be on the steering group as she had lots of ideas about how things could be improved. At her first meeting, the project manager greeted her and invited her to join the others seated round a table. Several were engrossed in their laptops and the others avoided eye contact when she approached. The project manager was chairing and started the meeting assuming everyone knew each other. Pamela didn’t know anyone and felt at a disadvantage. In spite of her natural confidence, she didn’t want to create a fuss at her first meeting so didn’t say anything.

The meeting was conducted in a very formal way. The language used was undecipherable for ‘outsiders’, with lots of acronyms and specialist terms. Added to which, the people around the table continued to avoid eye contact or display any other encouraging body language. When Pamela said anything most people looked down at their papers and laptops, so she had no idea whether her comments made sense or not.

At the end of the meeting everyone rushed off. The project manager thanked her for coming and told her she would be receiving details of the next meeting.

The whole experience left Pamela feeling completely disempowered.

The meetings were held monthly and though Pamela had struggled with that first meeting, she told herself to persevere and that it could only get better. During the course of one meeting, Pamela volunteered to help out at the COPD stall being held at a health fair. Her offer was accepted enthusiastically as they were short staffed and didn’t have enough people to cover the stall for the whole day.

All the slights she felt she had received through her involvement in the project rose in her mind: the rude way she had been treated by not being introduced to other members of the project team; the lack of eye contact or welcoming smiles; the lack of reassurance that her views were valued, either through simple body language or spoken affirmations, all built up into a rage.

While at the stall, she got talking to some public contributors who were involved in projects elsewhere. She learnt that they were getting paid for their time on the stall as well as receiving travel expenses. She was surprised to hear this. No one had talked to her about claiming for travel expenses, let alone for her time.

As she started to think about this, she began to feel angry. All the slights she felt she had received through her involvement in the project rose in her mind: the rude way she had been treated by not being introduced to other members of the project team; the lack of eye contact or welcoming smiles; the lack of reassurance that her views were valued, either through simple body language or spoken affirmations, all built up into a rage.

 At the next meeting, she asked the project manager whether she could claim expenses for travel and her time on the stall, pointing out she had given a lot of her time to the project already. The manager looked horrified. “We don’t have a budget for this,” she explained. Pamela lost her temper. She stormed out and threatened to complain to the Chief Executive, her MP and others. The project manager told her line manager about this, who then asked me to help.

In disputes such as this, it is possible to see both sides. On one hand there is the hurt Pamela experienced, at being treated in such an excluding way. On the other side, overstretched health professionals are being asked to involve patients and the public in their work without any proper resources, training or guidance.

We identified two key areas for change going forward:

Put in place a role description spelling out the required time commitment and payment being offered

One of the first things I asked when I met with the project manager was whether there was a role description. This is essential for the smooth management of public contributors. It states the requirements of the role, the time commitments expected and the payments available. Any changes to this would have to be negotiated. So, for example, any extra activities or duties, whether initiated by a member of staff or by the public contributor, would be discussed and negotiated against the role description.

When Pamela volunteered to help with the stall, a role description would have made it easier for the project manager to discuss with Pamela whether she was prepared to do it in a voluntary capacity.

Make meetings feel welcoming and inclusive to all

Sometimes it feels like a revolution is required to change the way many meetings are conducted in the health sector. I sometimes fantasise about what it would be like if all meetings, from board meetings to team catch-ups, began with an ice-breaker, and whether this would help create the cultural change we are trying to achieve. But that feels like a pipedream. Instead, let’s aim for everyone to be treated with respect and courtesy, some human warmth and a more creative environment for the exchange of ideas.

In this case, the project manager put in place a ‘no jargon or acronym’ ruling for the meetings and reminded everyone that no question was too stupid to ask. She also introduced a less formal structure to the meetings, allowing space for the exchange of ideas, which gave Pamela the space to contribute.

Together, we managed to come to an understanding. The project manager found some funds to pay Pamela’s expenses and a role description was drawn up.

After a year, Pamela is still with the group. Her role is regularly reviewed and amended as the needs of the group changes. As a result of her contribution, the patient experience feedback for the service is now extremely positive, with the service regularly reaching their targets. In addition, she has been asked to participate as a public contributor in the respiratory steering group of the Sustainability Transformation Partnership (STP).

Getting involved in the group has lessened Pamela’s grief at losing her husband and she no longer feels so lonely. She once told me: “I never expected new doors to open for me at this stage of my life.”

Things come together – a blog about my mum

Our Managing Director, Deborah Evans shares a candid insight into the final moments with her mother…

I’ve always been struck by the title of Chinua Achebe’s novel Things Fall Apart.

My mum died recently and in her case it was much more like Things Come Together.  Mum lived in a brilliant Brunel Care home called Saffron Gardens. The care home is an amazing place where people, like my mum, with dementia are cared for by first class staff.

Right up until January, Mum was able to visit us at home and enjoy our company. However, in more recent weeks she stopped eating. She would hold my hand and gaze up at me, or touch a colourful scarf I wore.

As her body became weaker, infections would start to impinge on her health. The staff and I would try to discover what was wrong with her. We used all our foibles to try to give her medication or take her pulse, temperature and, most challengingly, her blood pressure. She was highly resistant, not understanding the strange sensations. It’s one thing to let your daughter put a temperature probe in your ear, but another when she starts squeezing your arm! We had a secret weapon; a kind-hearted Polish team leader from the other unit would come over and give my mum a big hug and tell her that he loved her – and then quickly slip her liquid medicine down her throat.

This kind of deterioration isn’t rare, which is why colleagues in Kent Surrey and Sussex AHSN have a ‘test bed’, which aims to harness technology to address some of the most complex issues facing patients and the health service and help support people with dementia at home.

Our team in the West of England are also working on how to take a complete set of vital signs and calculate a National Early Warning Score (NEWS) from a person who doesn’t easily comply with examinations and tests. We are also looking at ‘wearable’ devices, which can take and relay vital signs from people in their own homes to staff working in rapid response teams, out of hour’s services, GP surgeries and ambulance services. This would greatly help the GP, paramedic, out-of-hours and nursing home staff to understand how best to help a person who can’t describe and can’t comply with care.

At a time when the NHS is so stretched, I was so proud that her GP practice at Lawrence Hill Health Centre, BrisDoc, and the South Western Ambulance Trust fielded skillful and clinically astute staff to support us in helping my mum die at home surrounded by her family.

The evening before she died, we sat around her bed and sang songs they would sing at ‘Singing for the Brain’ and Mum would lift her arm as she recognised them.

The love and care of women of every colour and nationality at Saffron Gardens care home, and of committed NHS professionals, meant that everything came together for my mum at the end of her life.

Thinking outside the STP box

Our Patient and Public Involvement Manager, Hildegard Dumper looks back to our annual conference and the delights of playing Partneropoly…

If you happened to be walking through the corridors of the Swindon Hilton back in October, might have been surprised to find yourself in a room of shoeless health professionals screeching at each other in competitive excitement. You’d have seen the entire floor covered by a vast colourful quilt, which, when your eyes adjusted you would have recognised as rather like a Monopoly board.

This was the Partneropoly workshop at the West of England AHSN’s annual conference, which was given over to the theme of Sustainability and Transformation Partnerships (STPs) and brought together all those involved in delivering the three STPs in our area (Gloucestershire; Bristol, North Somerset & South Gloucestershire; and Bath, Swindon & Wiltshire).

The Partneropoly workshop was an interactive approach to getting the different stakeholders in the STPs to think ‘outside the box’ and see how they could share resources and expertise to make their plans more effective. Inspired by that well-known game Monopoly, Partneropoly was the brilliant brain child of Jan Cobbett at Bristol Health Partners, originally designed to encourage their Health Integration Teams to work more collaboratively across their ‘silos’.

In our workshops, we divided participants into teams based on their STP footprint. Each team could be made up of any combination of people from all kinds of organisations: commissioning, trusts, public contributors, industry, education, and voluntary sector. Just like in the traditional game, teams got to choose their playing piece – there was a boot, iron, top hat, car and so on – the only difference being these were huge! They threw the two massive dice and picked up their boot, iron, car or whatever and physically walked it around the board. Instead of landing on real estate like Mayfair, Oxford Street and the like, our teams landed on a possible partner organisation. This could be the AHSN, your local trust, clinical commission group, housing, police, education or just about any other potential partner. On picking a Chance card they’d be asked to think through how their STP might work with that specific stakeholder organisation on a specific area of work, such as equalities, patient safety or making better use of estates or workforce development.

I was fascinated to observe individuals being made to leap (in stockinged feet) well out of their comfort zone and interact with people they would not normally have reason to talk to. Then to top it all, they were actually having to listen to each other. I watched one group being dominated by two commissioners who were assuming they had to have all the answers. Eventually the penny dropped when they realised they had a valuable resource in their voluntary sector team member.

Afterwards, several people said it made them realise that there is a wide range of organisations out there that might play a meaningful role in delivering the vision of our STPs. Someone from a large trust told me they really had no idea there were so many organisations that could be working with. Those from industry said it had helped them understand what STPs are all about and how they could work more effectively with the health sector.

We are planning to use the game as a tool to get people from all disciplines interacting with each other. One of its next ‘outings’ will be with our Patient and Public Leads in the region to see how it can be of benefit to them.