Supporting a group during lockdown: the Patient Health Forum

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.”