“When I’m there, I forget my problems”
Maria Brook has been visiting her local hospice for wellbeing groups for almost a year, and the benefits have been huge. The mother-of-two, who was diagnosed with PAH 13 years ago, explains the difference this unique type of care has made to her life.
“I’ve been struggling since covid days. I used to see friends all the time, go to clubs, and go to rehabilitation exercise.
But through the pandemic, and the first half of 2022, I was stuck in the four walls of my house, still frightened to go out because of covid. It had knocked me so much, and I was still scared of mixing with people in case I caught anything. Because I was just sitting there, all I was thinking about was my illness.
I started accessing support through the PHA UK’s Listening Line and Paul, who I spoke to, suggested that accessing hospice services might help me. He thought they would be a good way of getting me out, and that they might benefit me in other ways too.
Paul and my specialist centre organised a referral to the John Taylor Hospice in Birmingham, near where I live, and someone from their team came out to assess me.
Discovering the early benefits
In July last year, I started visiting the hospice. It was once a week initially, to attend a group for people with respiratory problems called ‘FAB’ (Fatigue, Anxiety and Breathlessness).
We had talks about all sorts, including what makes your mind feel frightened when you have breathing difficulties, and how to deal with it.
We had talks about diet, and relaxation sessions too, and we got financial help around things like benefits. We had tea and biscuits, and I was interacting with the other group members all the time.
There was a respiratory nurse there and she was able to answer any questions and talk to my doctor for me if needed.
I felt at ease, and it took a lot of anxiety away as it’s not always easy to get a GP appointment. I felt like there was someone there to back me, and to help me. It was so reassuring, and it felt like a ‘link to health’.
Learning to live well
When the FAB programme moved from weekly to bi-weekly I began attending another group too, called ‘Living Well’.
These sessions include activities like crafting, bingo, relaxation, and meditation. We’ve had practical advice about managing breathlessness too and there is a room for treatments including massage, reflexology, and reiki. There are candles, lights on the ceiling, and it’s so relaxing. It’s unbelievable that all this is free for us. We just donate £5 for a cooked lunch while we’re there, which is always lovely.
There are all different age groups there, 15 of us in total, with different health conditions.
Enrichment, interaction, and friendship
The hospice staff encourage us not to worry, and to enjoy life. It’s helped me tremendously and it’s all down to the PHA UK because I only discovered it because of their recommendation.
Attending the hospice is such a good way of getting out of my four walls and interacting with people. I look forward to it, and even if I’m having a bad day, I still make an effort to go.
When I’m there, I forget my problems. It stops me sitting at home worrying, and it gets me a bit more active. Going to the hospice has helped me feel better about covid risks too; for example, I’ve now got over the fright of going into shops.
I’ve made a lot of friends through the sessions, and we have WhatsApp groups that we chat in. I’ve even gone out for lunch with one lady I’ve met there, and the hospice organised for us all to visit a pantomime together at Christmas, which was great.
Just like people within the PH service, people at the hospice will always go the extra mile. On Christmas Eve there was a knock at the door, and they delivered me a present. I was in tears, I was flabbergasted.
If hospice care has been mentioned to you, but you’re worried about it, I’d say just give it a go. You’ll probably be amazed as it may not be what you think it is. It’s not just about end of life. For me it’s fun, informative, and it helps my mind. It reminds me that I’m not on my own and I wouldn’t want to be without it now.”
If you think that hospice services may help you, please do not be afraid to ask your PH team about it, and discuss a possible referral, even if it has not been mentioned to you before.
Groups, programmes and services vary between different hospices; but the values of support, care and compassion are common to all.