Set up as an informal way for people to meet, socialise and chat, Parkinson’s cafés are popping up all over the UK and are run by volunteers and Parkinson’s UK staff. In this feature we meet John, who helps run 2 cafés in Lancashire.
John, 57, lives in Haslingdon, Lancashire. He was diagnosed with Parkinson's in his early 40s and lives with his partner, Montserrat.
"I first noticed symptoms when I was using the phone – my hand would shake when I held it to my ear," says John. "It wasn’t long before I was diagnosed with a condition I knew absolutely nothing about. It's awful, because you can feel quite alone and scared."
In 2009 John was made redundant from his job making parts for machinery. Feeling at a loss, he started working part-time at a local charity, Maundy Relief, who offer community services. "I felt like I was contributing so much more at the charity. We offered lots of local support, from counselling services and advocacy, to drug addiction and mental health outreach.
"However, over time my speech deteriorated and some afternoons I would end up slurring my words. Ironically people started confusing me for one of the patients of the drug addiction services. It became too difficult in the end and I felt it was time to step down."
In 2016 John joined a group of people affected by Parkinson’s attending a small drop-in café in Blackburn called the Nelson – a park pavilion and café run by a social enterprise. "Parkinson’s cafés were a relatively new thing – just somewhere informal for like-minded people affected by the condition to meet up now and then," he adds.
It was there that he met Rebecca Ward-Dooley, an Area Development Manager at Parkinson’s UK. "I got talking to Rebecca and she suggested I volunteer at the café. I decided to give it a go and completely loved it. I would introduce new visitors and make sure they felt comfortable and relaxed. It was something I could do at my own pace too, knowing that I had support if I needed it."
The success of the Nelson café in Blackburn got John thinking about the lack of support in his own area.
"We knew there wasn't really anything for people closer to Rawtenstall, so Rebecca said, 'Why don't we start looking for venues to bridge the gap?' Montserrat and I did some scoping around on the internet to see if there was anywhere suitable. It was important that it was accessible and that it was financially viable. We treated the whole thing like a little project."
They stumbled across The Whitaker, a picturesque not-for-profit museum and art gallery, and got the thumbs up from Rebecca.
"We put the word out through Parkinson’s nurses and flyers in GP surgeries, supermarkets and libraries, and suddenly we were getting 20-30 people turn up each month. People loved it."
John explains that he feels the café's success relies on it being friendly, informal and, most importantly, somewhere for people to meet who feel isolated because of their condition. He adds: "We have people turn up on their own who haven't really seen anyone for months, other than their Parkinson’s nurse. Some people say they feel judged when they go out, and this can really knock their confidence. We want to offer a casual space where people can be themselves, not have to worry about being stared at and drop by for just a coffee and a chat."
We have people turn up on their own who haven't really seen anyone for months
As well as offering a space to socialise, John says that Parkinson’s cafés can be a valuable source of information too. "We may have a Parkinson’s nurse come along to answer medical questions, or put people in touch with benefits advisers, or tell them about speech and language therapists. Partners and carers will often ask Montserrat questions about how she manages in a caring role, and she gives them tips."
At the moment, the Nelson café meets twice a month and Rawtenstall once a month, although John is keen to expand. He explains: "The bigger the group grows, the more regularly we’ll need to meet. We’re also looking at other areas, as some people can’t drive and find it hard to travel. But I need to make sure I’m not overdoing it. If I’m not healthy myself, then I can’t help as much as I’d like to."
At its heart, it's a place for people to drop by and have a cuppa
John adds that his message for anyone thinking of attending is to give it a go. "It's all about human contact. At its heart, it's a place for people to drop by and have a cuppa. Nothing too serious."
To find out more about Parkinson's cafés in your area, talk to your Parkinson's local adviser or call our helpline on 0808 800 0303.