Healthwatch carried out a survey of how people who need care at home coped during this difficult period and whether they had struggled to access services to meet their needs.
The hidden disability
Lu, from Little Stoke, told us she owed everything to her family who helped her through some dark days (her children are registered carers) when she was in constant pain and could barely walk. When she had the added complication of acute shoulder pain however she felt, due to her condition, this wasn’t examined properly by doctors who instead concluded it was another symptom of fibromyalgia.
Lu said: “If you have a chronic condition I feel you have been forgotten. I have had to put up with a lot of pain for what is potentially a dislocated shoulder and I have not been given an x-ray. I have heard other similar stories from people like myself with these conditions. However if someone, for instance, had something new or different happen to them I’ve no doubt at all the NHS would be amazing.”
Lu also told us her mental health suffered as a result as there were no groups she could go to where she could talk about her difficulties and fears.
She said: “I managed to keep up-to-date on the internet but more groups to help Fibromyalgia sufferers would have helped me to cope better.”
Our Healthwatch volunteer, Debbie James, who also suffers from fibromyalgia told us: "It can be a disabling condition and people don't realise this. At my worst, a few years ago I would have classed myself as being disabled. I was told by doctors to apply for a Blue Badge for my car."