We were very sad to hear about the passing of Dennis Hayes, a member of the Patient Health Forum (the South Birmingham Long Term Conditions Group that Gateway facilitates on behalf of Birmingham and Solihull CCG). We understand that he died suddenly at home, of a suspected heart attack, at the beginning of November.
We first met Dennis in 2014, when his GP referred him to the Health Trainer service for help with his weight. He and his Health Trainer Richard had a good rapport and built up a solid relationship, staying in touch even when Dennis’ need for Health Trainer support ended.
It was Richard who suggested that Dennis might like to join the Patient Health Forum, and encouraged him to go along – which he did, becoming a regular attendee and eventually committee member. When he chatted with us in 2019, he told us that joining the group had helped him to build his confidence and reduce his anxiety.
Our thoughts go out to those who knew Dennis, especially his friends at the Forum.
A statement from the committee
Pauline Hartley shared these words on behalf of the Patient Health Forum committee:
Dennis had been a member of the PHF for some years, going from a quiet and nervous newcomer to a valued mainstay of the committee.
He learned to share what he saw as the benefits of the group because he wanted to help members gain the confidence that he felt he had done over the time he had attended. He eventually joined the committee because he felt he needed to give something back to the group that had supported him. The committee are very grateful for his hard work over the years, often in uncertain times. He sometimes surprised even himself in the way that his confidence had grown and, although we knew him as a quiet man, he could be forceful and determined if he felt it necessary.
Those of us that were lucky enough to know him outside of the group knew him to be caring, courteous, generous, practical and an interesting friend. He enjoyed going to National Trust properties, where his knowledge of history made him an ideal companion. He liked music and theatre and his wry sense of humour often lightened a meal or coffee out, something he enjoyed doing. He liked to look after his home, where he had a collection of paperweights amongst his interests. He also liked to socialise and keep as fit as possible with his friends at the gym.
He cared deeply for the people in the group and the people from Gateway and relished being able to signpost anyone towards help. He was always ready to chat and fetch that ever important cuppa.
He battled with ill health with fortitude and wasn’t afraid to ask for, or take, help. He had come to understand the complex ups and downs of physical and mental health and so was a great help to people who appreciated his empathy.
He will be missed as a PHF member and friend and everyone’s lives will be poorer for his sudden passing.
If you knew Dennis and would like to share your thoughts or memories, you can add a comment below and it will appear underneath this article.
The Patient Health Forum (also known as the South Birmingham Long Term Conditions Group) is a social group for people who live with, or care for people who live with, a range of long term health conditions.
It’s run by a committee of volunteers but the monthly meetings, which usually take place at a community centre in Stirchley, are supported and facilitated by Gateway.
The group has been going for years now and, for many of the Forum members, the monthly meetings are a lifeline: some members live alone, or with the person they care for, and would otherwise rarely get the chance to socialise. The meetings provide a chance to meet friends and other people who are in a similar situation, as well as access to information and advice from local agencies and groups. Plus, of course, the all-important buffet lunch!
So in March, when the meetings had to be suspended, we had to make sure that we could continue supporting the group.
Switching to remote support
In mid-March, when it became obvious that gatherings would need to stop, we contacted all Forum members with the offer of a phonecall in lieu of the regular meetings. At that point, almost all of the members accepted the offer of a monthly wellbeing check or social call.
However, as you probably remember, things escalated quickly at the end of March. A week after offering the monthly calls it became clear that most members would have to isolate because they are over 70 or otherwise vulnerable. So we made the check-ins weekly. Many of the Gateway staff who’ve helped out at Forum meetings know the members quite well, and others were quick to offer befriending support, so we were very happy to do this… but it did mean that we were making weekly calls to more than 50 people.
Over the last two months, some Forum members have opted out of the calls, as they feel they already have enough support from friends, family or neighbours. But we have gladly continued to make weekly calls to the remaining members and, right now, we are continuing to support around 15 people.
What do we talk about?
Most of the calls Gateway staff make to Patient Health Forum members are social, but many are also practical. Amongst other things, we’ve helped people to have their medication delivered, register as vulnerable on the NHS website, find out more about the benefits they are entitled to, get in touch with a chiropodist, and start online shopping.
But sometimes the calls are surprising. We have found that as well as providing support, we are also empowering people, giving them the chance to be helpful to others as well as benefiting themselves. Becky, a support worker who’s been making calls, says: “One woman was fantastic about sharing her local info about food and pharmacy deliveries with me, and I have been able to pass this on to others who have also benefited. She definitely saw herself as contributing to our community knowledge rather than receiving from me.”
Kath, another staff member who’s been making wellbeing calls, pointed out that the crisis itself is also having some unexpected benefits. “Some of the patients told me they had reconnected with friends and family they hadn’t spoken to for a while,” she says. “One lady was pleased she’d actually had a two hour conversation with her daughter, who had previously been too busy to visit or pick up the phone.”
And Forum members have told us how grateful they are for the continued support. Some have told us they’d been feeling a bit forgotten by services, so a chat makes all the difference.
We’re very pleased to be able to help but it’s a worrying time for people who are already socially isolated. It’s not clear yet how the future of groups like the Patient Health Forum might look – but we hope that it won’t be long before we can start safely bringing people together again.
Some more comments from members…
“This call means the world to me. It breaks up my boredom and cheers me up. I enjoy having a natter and a grumble; it stops me from getting depressed, so I look forward to it. I miss the Patient Health Forum; seeing everyone there and the lunches.”
“I’m glad for the call. I don’t have a TV in my house, just a radio, but I’d usually be out meeting my friends. Not being able to chat much to people can get lonely, but this call helps me to speak to someone.”
“This call helps me if I need additional information, or when I am not sure about things like support for my disabled daughter. I’m happy to have a chat and you’ve helped me with your advice on how to keep myself busy doing jigsaws and mandala colouring. I really miss the Patient Health Forum gatherings so thank you for checking up on me weekly, it means a lot.”
“A big thank you to you and Gateway for calling me, especially in these difficult times.”
“It’s really kind of you to check up on me and make sure I am OK. It means a lot that you’re taking the time to ring me up.”
“Great to hear that someone cares; that we are not shut up and put away. I am happy I belong to some clubs including the Patient Health Forum. They are checking up on me which is a really nice thought especially in these difficult times.”
“It means a lot to me when you call. When you don’t see people it’s lovely to get a call out of the blue and have good chat. I have been feeling lonely, and isolating does not help the situation. Thank you, I look forward to next week’s chat.”
Last week the Patient Health Forum held their Christmas party, with singing, dancing… and a special visit from a certain Mr Claus!
The Gateway team was on hand to help, as ever, booking transport and making endless cups of tea, but for the party we made sure to include some special extras for this month’s event, including a Christmas quiz and some luxury Christmas cakes and treats. Forum favourite Reza entertained everyone with a selection of Christmas songs and dances that everyone could join in with, and even Father Christmas popped in with some presents.
The monthly meetings for the Patient Health Forum (also known as the Long Term Conditions Group) are a much-loved social event for many of the forum members, but we know that the Christmas party is especially important. Some people told us on Thursday that this would be the only social event they’d be going to over the festive season, and a couple of people told us they will be spending Christmas day on their own.
Experiences and expertise
As well as being a social group, the forum is actually an important part of the local NHS’s patient participation strategy. The group, which meets in Stirchley, is funded by NHS Birmingham and Solihull CCG, which uses the group to directly capture views and opinions from people with long term health conditions. This feedback is then used to improve local services, as the CCG explains on its website:
“By talking directly to patients with long-term conditions, we are able to ask them to help us with the design, improvement and review of health services, enabling them to draw upon their own experiences and expertise.” –NHS Birmingham and Solihull CCG
If you’d like to get involved with the long term conditions group, or you know someone in South Birmingham who might benefit from coming along, call the team on 0121 456 7820 and ask to speak to someone about the Patient Health Forum.
The meetings, facilitated by Gateway and funded by the NHS South Birmingham Clinical Commissioning Group (CCG), have gone from being every three months to every month. Gateway supports the group committee to host a range of speakers, health and wellbeing activity sessions, entertainment and social activities.
Members of the group – which is also known as the Patient Health Forum or the Personal Health Forum – are living with, or caring for people who live with, a range of long term health conditions.
The forum provides an opportunity for people to meet others with similar issues, but it also gives them a voice and the chance to influence services by giving their local CCG insights and feedback about the health services they all use.
Last week we spoke to some of the group members to find out a bit more about them, and how they feel they benefit from going to the meetings.
Dennis started coming to the Long Term Conditions Group after what he refers to as a “mental breakdown”. Now, he’s a key member of the group – a committee member with a strong social network.
Four years ago, Dennis’s GP referred him to a Gateway Health Trainer for help with weight management. However, at this point in his life Dennis was also quite mentally unwell. He’d been isolating himself at home, and worrying, to the point where he was having suicidal thoughts.
Dennis’s stress and worry problems came to a head one night and he emailed several people to ask for help. First thing next morning, his Health Trainer Richard visited him at home and arranged crisis support, including an emergency psychiatric appointment and ongoing help from a home treatment team. And later, Richard also introduced Dennis to the South Birmingham Long Term Conditions Group.
Dennis says, “I hadn’t been out for years and years. My flat was my comfort zone. But Richard explained what the group was like and what it was for. He gave me the names of the people who ran it, and I went along.
“When I first started coming, it was difficult to speak to people. I was so nervous, I would just stay quiet. Then the committee gave me a job as a ‘meet and greet’ person. The first time I did that, I remember my hands shaking so much I spilled the tea.
“But over the next couple of years my confidence really built up. Now, I can stand up at the front of the group and make announcements, introduce people and thank the speakers.” He seems surprised at himself. “I even tell jokes!”
Dennis says he likes the group because although people have health issues and can talk about them if they want to, it’s not the focus of the meetings. He says, “We all know everyone has a reason to be here. We’ve all been through something, but you don’t have to talk about it. You can concentrate on the entertainment and the discussion.”
As Dennis is talking, the meeting is finishing and a stream of friends stops by to remind him to call them or meet up later in the week.
He says, “I don’t want to be dramatic but I really believe I wouldn’t be here if it wasn’t for this group. I haven’t had suicidal thoughts in ages. It’s a stepping stone, if you like, from having an illness to having something to look forward to.”
Membership of the Long Term Conditions Group is open to anyone who lives in South Birmingham, or is registered with a South Birmingham GP, and lives with a long term health condition. If you’d like to get involved, give us a call on 0121 456 7820 and ask to speak to someone about the Patient Health Forum.
Did you know that being lonely is actually harmful to physical health?
Studies show that a lack of social relationships is a big health risk1. Researchers have found that it can be as big a mortality risk as smoking fifteen cigarettes a day!
Now, the government has decided that loneliness is a problem worth tackling. In January, Theresa May appointed Tracey Crouch to lead cross-government work on loneliness, to “shine a light on the issue” and “bring an end to the acceptance of loneliness for good”. And in April, this was followed up by the launch of the “Building Connections Fund”, aimed at supporting programmes that “bring people together”.
There’s no doubt that, in this age of austerity, the Minister for Loneliness has a big job on her hands. But we’re very glad that it has become a national talking point.
Widowed older homeowners living alone with long-term health conditions.
Unmarried, middle-agers with long-term health conditions.
Younger renters with little trust and sense of belonging to their area.
Reducing social isolation in Birmingham
At Gateway we support people who fit all three of these profiles, as well as many of the other identifiers mentioned in the report, such as people with financial hardship, and people who don’t feel a connection to their neighbourhood.
Despite a lack of external funding, we are continuing to run the Healthy Futures service, which supports socially isolated people in Birmingham. GPs can refer anyone that needs non-medical help into the service, so that includes people who have issues around housing, alcohol, finances, benefits, and much more. Our Healthy Futures navigators offer a range of one-to-one help, whether that’s a cup of tea and a friendly chat to get through the day, or more complex support that requires a range of specialist help.
And for people with long term health conditions, we help to run a local Patients Health Forum. This group was set up to allow service users to give feedback on local health systems, but over the years it has also grown into quite a social club. So as well as helping with the practicalities, we make sure to really push the social side of things, making sure events are organised regularly and include food, entertainment, and plenty of time for people to chat. Most of the people who go to the Patient Health Forum fit one of the first two profiles mentioned above, and many of the forum members (or, sometimes, their carers) tell us that it provides them with vital social support.
Earlier this month, the Patient Health Forum took place in Stirchley, where we celebrated the 70th Anniversary of the NHS with entertainment from guest singer Reza, who got everyone moving.
At the first International Social Prescribing Research Conference, in June, Key Speaker Dr William Bird explained how loneliness leads to chronic stress which, via its effects on the endocrine and immune systems, enhances risk of long term conditions. He was keen to promote the concept of supporting people to find “greater value” – that is, not just telling them to do standard physical activity, but working with them to find their purpose.
And this is how we work at Gateway, because we can see that it gets results. In the case of Healthy Futures, as we explained in our own poster presentation at the conference: Healthy Futures did not fall into the trap of “doing what’s best” for patients; generally the patients led the support. Gateway believes that asking someone what their priorities are, believing them, and working with them to build self-confidence and resilience creates a programme of support that is more successful and sustainable.
It’s one thing to find people to say hello to, but it’s quite another to feel “plugged in” – to feel part of something; to feel that you’re useful and that your contribution matters. Having things in common is a great starting point. That’s why we’re keen to make sure that all the services we deliver that involve groups of people – for example Solihull Lighten Up, Peer Educators and the Maternity Voices Partnership – work well as social groups, and we encourage people to stay in touch using WhatsApp or Facebook groups, too.
We’ve known for a long time that social isolation has a big impact on health and we’re very glad this is starting to be addressed at a national level. For our part, we will continue to help people to build stronger bonds with others through a range of tailored support.
1Stats taken from the following studies:
House JS, Landis KR, Umberson D (1988) Social relationships and health. Science 241: 540–545
Holt-Lunstad J, Smith TB, Layton JB (2010) Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Med 7(7): e1000316
Holt-Lunstad J, Smith TB, Baker M, Harris T, Stephenson D (2015) Loneliness and social isolation as risk factors for mortality: a meta-analytic review. Perspect Psychol Sci. 10(2):227-37
Membership of the Patient Health Forum is open to anyone who lives in South Birmingham, or is registered with a South Birmingham GP, and lives with a long term health condition. If you’d like to get involved, give us a call on 0121 456 7820 and ask about the Patient Health Forum.
Social isolation is a big issue for people of all ages, but research shows that it’s a particular problem for those who live in cities, older people and people with a long term health condition. That’s why having more opportunities to get together with others for a cuppa and a chat is really important.
A great example of a group supporting those at risk of social isolation is the Patient Health Forum. It’s for anyone in South Birmingham who has a long term health condition, and its members include people with everything from asthma to arthritis, Alzheimers and anxiety.
Although it can be useful for people to talk about their health condition during the meetings (and, in fact, the meetings are funded by South Birmingham CCG in return for feedback about the health services they use), the biggest benefit that the Patient Health Forum brings is the opportunity to meet and talk to others.
Our first session of the year took place a couple of weeks ago in Stirchley, and 31 attendees enjoyed a buffet lunch, a talk from Wayne on the Five Ways to Wellbeing, and entertainment from a Michael Bublé tribute act. Some, like Irene, even had a sing and a dance!
Committee member Pauline Hartley said, “It matters not what health condition people have – but how they can be helped to deal with the isolation, the social problems and the access to services that will help them. Our members constantly ask if the group will stay open because it so important to them and even sometimes is the only place they go to for social interaction.”
Although the Forum had already been running for a number of years, Gateway became involved in 2014 to help facilitate the meetings. Since then, we’ve been supporting the committee with the general running and budgeting of the group, organising the venue, transport and refreshments, bringing in speakers and entertainment, and sharing our knowledge and contacts. And although funding for the group has dipped recently – meaning we’ve had to go from monthly to quarterly sessions – we’ve seen numbers continue to grow. We’re particularly pleased that older people and carers are coming along because, according to research evidence:
In the UK, 17% of older people are in contact with family, friends and neighbours less than once a week, and 11% in contact less than once a month.
Loneliness is common in carers, especially resident carers. Other groups at risk of loneliness include older married women, older people who live with married children, those living in sheltered housing or residential care and older people who emigrated from other countries (especially those who do not speak the language well).
Loneliness seems to be less prevalent in those rural areas where a sense or community still remains than it is in more densely populated urban areas.
Lack of money limits the opportunities for overcoming loneliness: those on lower incomes are more prone to feelings of loneliness than those who are better off.
Membership of the Patient Health Forum is open to anyone who lives in South Birmingham, or is registered with a South Birmingham GP, and lives with a long term health condition. If you’d like to get involved, give us a call on 0121 456 7820 and ask to speak to someone about the Patient Health Forum.
You may remember that, back in March, we wrote about our involvement with a forum for people with long term health conditions. Birmingham South Central CCG had offered to cover the group’s running costs in return for some “patient insights” and feedback about the health services they all use, and Gateway became involved to facilitate the group sessions.
Well, we’re delighted to say that the group is still going strong. (And this week we had a bit of a Christmas party – as you can see from the photos!)
Since Gateway’s involvement, the forum – now known as the Long Term Conditions Group – has grown, with eight new members. Some of these are Health Trainer clients who have been encouraged to join, and others found the group via notices in their GP surgery.
Members of the group are living with a range of long term conditions, including heart problems, diabetes, and ME. The forum provides an opportunity for people to meet others with similar issues, but it also gives them a voice and the chance to influence services.
Forum Committee member Pauline Hartley said, “This group, the only one I know of which supports people with ANY long term health condition and their carers, was struggling to survive and the funding we received from BSCCCG allowed us to look forward to regular meetings for this year.
“Gateway have played a very large part in our survival because, having been asked to support us, they have done everything they can to make our meetings run smoothly, to handle our budget as economically as possible, to encourage the small committee, to facilitate our speakers and to cheerfully assist and encourage our members to fill in the forms that enable us to pass our views and experiences on to the CCG.
“We have also been invited to attend health service events and Gateway have made sure we are introduced to services we may not have known about.”
This year the group has hosted a range of speakers, including representatives from Birmingham City Council, who’ve talked about benefits and housing issues, and from Carers UK. We also heard from Painting the Rainbow, who use tai chi and qigong as the core of their falls prevention programme, and Sarah from Gateway’s very own Volunteer Befrienders team, who introduced the group to our befriending service.
Health Trainers Joy, Chris, Tina and Glenn, help out at the meetings. Glenn said, “It’s a really good way for people to meet others in the same boat. Having a long term condition can sometimes make it difficult to get out much, and a social group like this can be really helpful, so we try and make it as easy as possible for people to get involved – we provide taxis to pick up and drop off, we provide lunch at every meeting and we make hundreds of cups of tea!”
Pauline continued, “It is wonderful to see the numbers increasing again. This group provides a ‘safe’ place for people who have chronic conditions but know they can come to a group that will offer them understanding and support. It matters not what health condition people have – but how they can be helped to deal with the isolation, the social problems and the access to services that will help them. Our members constantly ask if the group will stay open because it so important to them and even sometimes is the only place they go to for social interaction.
“We’re looking forward to seeing the group flourish and grow, so that as many people as possible can enjoy support and fellowship – and can also feel they are making a useful contribution to shaping the NHS services for people with long term health conditions.”
Membership is open to anyone who lives in South Birmingham, or is registered with a South Birmingham GP, and lives with a long term health condition. If you’d like to find out more, call Gateway on 0121 456 7820 and ask to speak to a Health Trainer about the Long Term Conditions group.
Gateway has recently been asked to help run a Personal Health Forum for people with long term health conditions.
The Forum, which has been running for a few years, is primarily a support group but, as is the case with many such groups, they’ve been struggling to gain the funding they need to keep going over the last few years. So, recognising that this group is valuable for consultation purposes, Birmingham South Central CCG has offered to cover their running costs in return for some “patient insights” and feedback about the health services they all use.
Gateway will be facilitating the group sessions and, in doing so, offering some practical advice and information about services, as well as organising the feedback from members. We’re well placed to do this, of course; our established links across the south of the city, through the provision of our Health Trainer service, should be valuable to the group.
There’s a very important social side to the Forum, too. Having a long term health condition can be quite isolating at times, so this is an opportunity to get together with others who understand what it’s like. One group member said, “this is the only group I know of for people with long term conditions. There are groups for particular issues – diabetes sufferers, asthma, stroke clubs – but this is the only group I know of that brings people together with different issues, and it’s all the better for that”.
The Forum meets six times a year; every two months. Members plan the agenda themselves, including suggestions for guest speakers and activities. Gateway has taken on the practical side of things – we manage the budget and make all the arrangements for each meeting, including booking the venue, catering, speakers and activities – and even providing transport for those who wouldn’t otherwise be able to attend.
As well as this, of course, we will collect the patients’ feedback in a way that’s useful for everyone. We will provide the CCGs with information about what it’s like for people to live with and manage a long term condition, as well as the availability of health services and the sort of support people feel they have received. We will also try and encourage group members to go to more health service events.
We’re very pleased that we’ve been asked to be part of this new partnership, as the Personal Health Forum fits in so well with the rest of our work and our ethos. We’re here to listen, to help give patients a voice, to help people who might otherwise be isolated, and to influence services, and our work with the Forum will do all of these things.
The group is keen to boost their membership, and to help more people benefit from the support they provide, so the link with Health Trainers is a useful one. Many Health Trainers are already engaging with GP practices and their patients in the area the forum covers, and many of these patients have long term conditions that their Health Trainer is helping them manage, so it’s hoped that some of these people may be interested in getting involved.
Health Trainer Glenn Rodgers said, “I’ve already got a client in mind and I’m going to be encouraging them to come along. It would be an incentive to get out of the house and an opportunity to talk with like-minded people. The group gives members the opportunity to comment about health services, whether it be positive or negative, and to have their voices heard.”
The first Gateway-facilitated session took place at the beginning of March and 19 group members took part. After some introductions from the CCG and Gateway, and a chat about how the Forum will work going forward, the group had a guest speaker from the British Legion Handyperson Scheme, then a buffet lunch and some time for socialising.
Personal Health Forum Committee member Pauline (pictured in the centre of the photo on the left) said, “after a couple of difficult years I am now feeling much more positive about the future of the group. This welcome partnership has given us the chance for the group to grow and flourish so I hope we will keep old members and gain many new. Our thanks go to Gateway and the CCG for giving us this opportunity.”
If you have a long term health condition and you’re interested in joining the Personal Health Forum, give Maxine a call at Gateway on 0121 456 7820. You need to live, or be registered with a GP, in South Birmingham.