Category: PHF

Dennis chatting with Leslie and Keith

“I wouldn’t be here if it wasn’t for this group”: Dennis’s story

We’re pleased to say the South Birmingham Long Term Conditions Group, which we started supporting in 2014, is still going strong.

carer picking up leaflets
The meetings include an opportunity to share information and find out what support is available
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.

Meet Dennis

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.

holding hands

Loneliness is bad for your health

Tracey Crouch MP
Tracey Crouch MP, Minister for Civil Society and “Minister for Loneliness”.

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.

What are the risk factors for loneliness?

A recent report by the Office for National Statistics gives some food for thought. It identified three profiles of people at particular risk from loneliness:

  • 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.

Connecting people

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.

References

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.

Providing insights and preventing loneliness: 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.

Long Term Conditions group: giving patients a voice

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.

long term conditions groupWell, 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.”

long term conditions groupThis 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.

A new start for the Personal Health Forum

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.

patient forum 1Gateway 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.

Why Gateway?

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.”

patient forum 2The 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.