Share your experiences of long-term condition with CQC - £300 voucher to be won

I have been on antidepressants for 38 years

I have experience of caring for someone with a long term chronic condition, they are satisfied with the care that they receive so far. Main concerns would be cuts to NHS funding
which adds yet more strain to the service.

My elderly Mother suffers from Vascular Dementia and I had never imagined what an emotional turmoil it could be to watch someone very slowly fade away. The period prior to her entering a care home was fraught to say the least, but now that she is being cared for the stress has reduced somewhat. Fortunately she is being very well looked after.

Everyone in our household has a painful and debilitating long term health condition that we are having to manage ourselves as doctors are clueless and do not understand the impact on our lives.

I have a few long term health conditions, they are depression and chronic pain that came from breaking my hip over five years ago. I don't think there is enough help for people with mental health problems.

I have a long time condition and have been taking the same medication since I was young. I don't see the Doctor about it because I just go on the repeat prescription list via the local chemist

I have suffered from a heart condition since early teens & while medicine & clinics has improved over the years, my fear is at some point my meds will no longer work. It's sad to live with that thought.

My husband sufffers from ulcerative colitis and has done for the best part of 25 years. This has a major impact on our lives especially when he has a flair up. Our local hospital offer a consultation over the telephone with an IBD nurse which is great but because he has become immune to the usual treatment this condition impacts on our lives in a major way.

I have IBS for a year it was really difficult to control but now with meds & careful diet I’m ‘normal ‘ again

i have a long term condition which causes blood clots so im on warfarin for life. I was diagnosed with it about 10 years ago. Its just something you learn to live with x

For many years I was told that my pain & exhaustion was all in my head, that I was depressed but eventually I was diagnosed with fibromyalgia but wasn't told anything about it just handed a piece of paper with the word fibromyalgia written on it & told to go & find out about it. It was so frustrating as I didn't have a computer so went to the library & took out lots of books to try to find out more about why I was feeling like this. In doing so many years later I have managed to diagnose & help lots of friends with the same condition when their doctors didn't know what was wrong, told them to go back & get them to test their pressure points & sure enough I was right. It is now such a common condition & a terrible one to live with for the sufferer themselves & their families & it's so frustrating that they don't seem to have consultants who deal specifically with this, nobody seems to know if it rheumatological or neurological & once you're diagnosed God help you if you ever have anything else wrong with you as they now just put it down to your fibromyalgia & tell you that you have to put up with it. I've recently had this problem with my GP who I have now changed & am reported to NHS England for negligence as I was positive there was something neurologically wrong with me but for 12 months they refused to refer me despite asking several times. Eventually I had to pay to go privately & sure enough I was right because nobody knows their own body like themselves so you know when something is wrong & is not fybro related. I have been diagnosed with Functional Neurological Disorder which is a problem with your central nervous system whereby it doesn't transmit messages to & from the brain causing pain numbness, loss of feeling, swallowing & digestive problems among many other things. Sadly it's like fibro, they don't know what causes it so can't cure it, just treat the symptoms which my GP never does as they just keep telling me there are medically unexplained illnesses. I've been treating myself homeopathically for my digestive issues which have been terrible but I'm gradually getting there although it will probably take a few more months to clear completely on the Candida Diet which is tortuous but as about 80% of your immune system is in your gut hopefully healing myself from the inside out will help my fibromyalgia & FND.
Here is a poem I wrote about how I felt about the way I was treated before being diagnosed with fibro.

The Invisible Disease

Why will no-one believe me when I say my muscles ache
With a pain so intense but they think I’m a fake
They tell me I’m stressed and suffering from depression
But I’m not crazy, this is not an obsession
Your pain isn’t real they told me for years
Your pain isn’t real so hold back your tears
It’s all in your head, your pain isn’t real
But they don’t understand this hurt that I feel
The pain and exhaustion just wears me out
All I want to do is to scream and shout
But they still won’t believe me that all this is real
I just wish for one day they could feel how I feel
Your pain isn’t real they told me for years
Your pain isn’t real so hold back your tears
It’s all in your head, your pain isn’t real
But they don’t understand this hurt that I feel
Then one day they came up with a name for this invisible disease
They call it Fibromyalgia, finally someone heard my pleas
Giving it a name won’t take away this pain so intense
But at least now my suffering all makes sense
Your pain isn’t real they told me for years
Your pain isn’t real so hold back your tears
It’s all in your head, your pain isn’t real
Maybe now they’ll understand this hurt that I feel
Copyright Liz Denial 15th March 2018

I've lived with arthritis for over 40 years and it's really debilitating. I struggle to live day to day and struggle to find the help and care I need.

My father died two years ago today. He had struggled with dementia for over eight years. My mum was stoic and cared for him independently for as long as she possibly could. During this period,the care received was insufficient and the situations my mum coped with were entirely lacking in dignity for both her and my father. Sadly, he had to go into a nursing home for the last six months of his life. My mum spent every day, all day by his side. As a result, the care available from the staff was sufficient to support. The staff were was very helpful and kind. However, it was very clear that there are insufficient staff in our care homes and that staff are immensely overworked. Nevertheless, they provided the best care for my father and for my mother when she was visiting. Thank you to them all they did to look after my Dad. I nearly didn’t select the home because the CQC grade was ‘Requires Improvement’. I found the grading very confusing because I had hoped for better for my father but couldn’t get him into the few homes that were graded more highly. In the end, I am not sure alternative homes were “better“. Our social worker helped us understand that what my father needed more than him anything was a home that cared. His dying hours could not have been more peaceful, supported very much by highly qualified and very sensitive carers. My memories his final night are very tranquil as a result and I am very grateful and always will be .

I have an underactive throid which when i was 18 was misdiagnosed as depression and as a result i was put on a now banned anti depressant which led to me being in a mental health hospital . My condition is now managed by tablets and i have regular blood tests. The dr's are very good at keeping up with my routine blood test appointments most of the time but i do have to be organised and prompt them sometimes.
I have never paid as i had an exemption certificate and now in Wales it's free anyway. I consider myself very lucky to have had such excellent care once i was disagnosed correctly.

None of my family need help at the moment and i hope that doesnt change in the future. 15 million seems alot though i never knew it was that much x

I live with a long term condition but I have medication that eases my pain plus I have physio and live a clean healthy lifestyle as I noticed my body was constantly in pain when I was unhealthy since adopting a healthy lifestyle and light excercise my condition has improved a lot compared to how it was

My husband had serious health problems including COPD, heart problems and finally cancer. We cared for him at home - all close family helping out. He wanted to be at home rather than a hospital or hospice. Doctors, nurses etc., were fantastic.

I've been battling anorexia (eating disorder) for 4 years. Luckily, I recieved support straight away with the adult mental health services in my town, and I am able to see my care coordinator weekly, and a dietician to help with my dietary intake. I don't have any physical long term conditions.

My experience of my own condition and that of my close family is that everybody adapts and does what they need to do and with the utmost consideration and understanding and love. It helps to have open honest and loving relationships!

Asthma and debilitating insomnia which permeated every part of life. I a loathe to accept any long term commitments because when I haven't slept a wink for several nights I lack energy, drive and perspective so I have learnt to self limit my life in order to cope.

I have crohns I'm ok at the moment but I do need more help when I have a flare up.I was very ill when I was young so my husband had to give up his job to look after me and the children.

I have high blood pressure and mental health problems. I was on medication for my BP but have lost weight and stopped smoking and alcohol since it was diagnosed few years back, so I stopped the medication amlodipine. I now regularly check my own BP and take health supplements and vitamins to lower it naturally.

I agree with the comments about the statistics? 1 in 15? And what is a long-term condition - athlete's foot, a lazy eye, rosacea? Also, I agree with the comments about data privacy. If you want to get this information, it would be much better to have a link to an anonimised survey.

I've been suffering from M.E. and rheumatoid arthritis for 16 years; while pain is mostly kept at bay by medication, the crippling tiredness caused by M.E. is greatly affecting my life, it's left me unable to work and socialise.

I have Dercums Disease (Apidosis Dolorosa). It is a rare disease with painful lipomas throughout the body and many side issues including Fibromyalgia, IBS etc. I was diagnosed with it over 35 years ago by a paediatrician I was sent to (despite then being 33 years old) as they thought it might be a childs disease I had got as an adult. It was then known in the USA but rarely in the UK. Due to that treatment was more "lets see if this works!" I had 3 liposuction operations in London, again then a fairly new process in the UK. This was to remove fatty tissue in the hope it would help my mobility which was painful and difficult. After these failed to help and left both legs very pitted from cannulas I was given pain meds and that's been it. I am treated for each side issue such as fibromyalgia but nothing has been done to help with my main diagnosis. I was told back then that as it was rare there was not the money for it to be researched. Every time a new problem arises I have to consider if its a side affect of the DD. Every time I see a new doctor, consultant etc I have to inform them about DD as they don't know about it. I get very frustrated, the pain flares up periodically and there are times when this has led to depression. I have met both the best and the worse of UK practitioners. The best do as much research as they can into DD and take it into consideration when treating me. The worse push it to one side and one consultant told my GP that in his opinion I should loose weight, exercise more and get on with my life. I don't have help with care because I want to remain independent as long as possible, but I do worry that when I need help the fact that my main illness is rare and not generally known will work against me.