Out and About in Coventry: Community Voices

Hearing those with less voice in society, is one of Healthwatch Coventry’s aims: - to ensure that everyone’s experiences are heard. People with Fibromyalgia have challenges in terms of mobility, and other issues that might mean they are isolated. 

Who are the The Fibromyalgia (FMA) Coventry Support Group

The group holds monthly meetings for people living with the condition to catch up and share their experiences. The group has been set up for people with the condition to get information, share hints and tips to help manage their symptoms, and to hear relevant speakers. 

It’s a chance to gain friendship and support in a welcoming and open environment. And as they say, 

Laughter is the best medicine.

Find out more

Fibromyalgia is a chronic condition that causes pain all over the body, as well as:

• Brain fog
• Tiredness
• Other physical symptoms, such as irritable bowel syndrome. 

With Fibromyalgia it is difficult to get about, and many with the condition are unable to drive or work. The NHS believe that one in twenty people could be suffering from different levels of FMS at anyone time.

There is no cure, but symptoms can be managed.

We met with the group, and they spoke to us about their experiences of health and social care. This is what they told us: 

Blood tests

• “They are always sending us for blood tests.”
• “I have paid for phlebotomist to come to my home, as I had a bad experience”
• “Chemist on Holyhead Road is good for blood tests” 

GP 

• “Hard getting appointments at GPs”
• “They don’t give me enough time to tell ‘em [what I need to]”
• “I always book a double appointment (online), so I have time to tell doctor everything”
• “Getting past the receptionist is difficult”
• “Two years ago, a doctor said, “Fibromyalgia doesn’t exist”
• One person said the doctor said they “were too young to have fibromyalgia”

Getting an online appointment

• “Not speaking to a human speaking to a message”
• “Online forms at GPs Is this the way it is going for all of us”
• “Young and old find it hard to fill in an online application to see a GP”
• “My mum doesn’t have a SMART phone”
• “It will end up; people won't be able to book appointments”
• “Are all apps going to change to the new system?”
• Long process – the experience between speaking to a GP surgery and getting an out of hours doctor, “I went through 7 actions before I got an appointment”

GP and medications

• “When they give drugs, doctors should explain what they do and how to use them properly”
• “A nurse told me about my meds – what they are and how to use them”
• “One doctor asked me which drugs I would prefer – I don’t know, I am not a doctor”
• “It’s like “here take these, suck it and see”
• “They (the docs) have changed meds so many times. I have the right ones now and not changing again”
• People felt that they are quite often prescribed a “drug that doesn't agree with you” – the drug must be the right one, as each body and case of FMA is different and different bodies react to drugs differently.

Pharmacy

• “Chemist looked at meds, had to deal with another pharmacy, caused no end of problems due to shortness of drugs”
• There is an acknowledgement that there has been an increasing shortage of drugs due to complex factors that include raw materials shortage, wars, and cost of transport, which is having an impact on patients and pharmacies in terms of the services they can provide and receive.
• “When they give drugs, doctors should explain what they do and how to use them properly”

Outpatient appointments

• “Have pain clinic at George Elliott, have neurologist at UHCW – they don’t speak to each other, nothing is shared”
• “Need support with menopause, get passed pillar to post, everything is separate”
• “Have to go to check my eyes in Wellesbourne”
• “14 weeks offered procedure for pain management, Rheumatology for back"
• “They treat everything as a separate symptom – it is all part of Fibromyalgia”
• “Pain management delays”
• “Lidocaine infusions for pain last for 7 weeks, then have to go back on waiting list – 7 months wait for pain relief”
• “Used to have a great doc based in Coventry – now moved to Rugby, can’t drive. And it’s expensive to get there and back”
• “Steroid injection doctor is now in Rugby, get an orthopaedics appointment there, but can’t drive”
• “System sent me to Rugby, when I live in Coventry”
• “Excellent care from my oncologist consultant, outpatient nurses and day care, staff”

What would help make services better?

• More training for doctors and health professionals around Fibromyalgia.
• More explanations and information about the drugs and treatment from GPs
• Taking people’s symptoms as a whole, as part of Fibromyalgia and not as separate symptoms.
• Help with transport costs**
• Acknowledging the difficulties
• Reduce delays in pain management availability. 

**Costs of getting to appointments and delays in appointments and lack of medication availability means that people with Fibromyalgia struggle to manage their condition.

Support groups such as the Fibromyalgia Support Group in Coventry play an important role in supporting people’s wellness and mental health.

Call to action   

Help us make a difference – tell us your stories of health and social care, whether your experience is bad/ indifferent or good let us know what you think.  

Healthwatch can help you get your messages , views and experiences across to those in power to help improve services.  

Take three minutes to share your experience