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

(124 Posts)
EllieGransnet (GNHQ) Fri 15-Mar-19 13:20:00

This thread is now closed

Living with a long-term condition whether that's yourself or someone you love can be very difficult both physically and emotionally. Which is why CQC (Care quality Commission) have launched their #DeclareYourCare campaign to encourage people to share their experiences of health or adult social care – not just poor care but celebrating good and outstanding care too!

Here’s what CQC have to say: “About 15 million people in England have a long-term condition - and this is rising, with people with long-term conditions now being the main users of health and social care services in England. From research we carried out, we found that 88% of people affected by long-term health conditions who have not made a complaint about poor care were concerned about being seen as a trouble-maker, in comparison to just 30% of those who are not affected by a long-term condition. Plus, people with long-term health conditions are 10% more likely to refrain from expressing concerns over poor care due to fears about not being taken seriously. Positively, the research found that when people did raise a concern or complaint, the majority found their issue was resolved quickly, it helped the service to improve and they were happy with the outcome."

Share your experiences of long-term conditions on the thread below and everyone who does so will be entered into a prize draw where one GNer will win a £300 voucher of their choice (from a list).

Thanks and good luck with the prize draw
GNHQ

Standard Insight T&Cs Apply

M0nica Fri 15-Mar-19 14:01:47

A bit worried about your statistics, Does the 15 million include all those taking medication for high blood pressure, statins and other conditions that they have but actually cause them no problems, pain or need for care and are unlikely to ever do so.

I think it does a disservice to those who do have difficulty, who are in pain and do need care to use these huge meaningless statistics.

15 million people needing care is 1 in 4 people, man, woman, child and all the rest. and I just do not believe it.

Teetime Fri 15-Mar-19 14:24:00

I used to manage a Long Term Conditions community nursing team which included Diabetes, Heart Failure, COAD, Macmillan, Respiratory as well as a raft of other multiple pathology conditions. I have an LTC myself - Systemic Lupus erythematous I could write you a book but I will distill it to one comment which is this. In my experience Highly trained Specialist Nurses understand and deliver this complex care and management best and its best done in the community rather than in hospital.

EllieGransnet (GNHQ) Fri 15-Mar-19 16:01:49

@M0nica CQC would like to respond to your post by saying:

About 15 million people in England have a long-term condition. Long-term conditions or chronic diseases are conditions for which there is currently no cure, and which are managed with drugs and other treatment, for example: diabetes, chronic obstructive pulmonary disease, arthritis and hypertension. You can view the research behind our statistics here

M0nica Fri 15-Mar-19 17:22:39

My query was not about how many people in England have a long term condition, but how many in that 15 million actually require care at the moment or in the forseeable future

Three of my family fall in the 15 million, but none of them have conditions that mean they need care now or are likely to need care in the future as a result of their conditions. How many of the 15 million fall in that category.

Charleygirl5 Fri 15-Mar-19 18:10:47

I have around 4 long term conditions, one since my teens but I do not need help in any shape or form at present.

tanith Fri 15-Mar-19 18:33:23

I also have 3 long term conditions I don’t need any help apart from my meds.

Telly Fri 15-Mar-19 18:41:21

My husband has a long term chronic health condition and we have found that we are left to manage it ourselves. How sick people cope without a partner or close relative to steer them through, we really just don't know. Getting medical assistance has proved very, very difficult. I have a couple of long term conditions as listed but need no help at all and I hope to keep it that way. From my experience help is not available anyway.

Ngaio1 Fri 15-Mar-19 18:45:54

I have one chronic health condition diagnosed and am in the process of investigations of another. It has taken months and months to get to where I am now with second diagnoses. I am sure NHS Doctors are doing their best but the wait between seeing specialist after specialist is far too long.

trisher Fri 15-Mar-19 18:46:37

My mother had a long term blood condition and her medication needed to be adjusted sometimes. in order to decide about this she needed a blood test every 3 months. My mother was never intimidated by hospitals or medical staff. She grew very tired of making the long journey to hospital and the wait for the blood test just to be told that her medication was fine.She asked and re-asked until the service was changed and her blood test was taken in her own home. She was 90+ at the time, so even the very elderly can ask for improvements.

moggie57 Fri 15-Mar-19 19:41:21

us lot are independant. there is help out there if you need it. but we tend to bottle things up and smile sweetly and say i'm ok.

Applegran Fri 15-Mar-19 19:52:24

I have become breathless - at one point I couldn't have a conversation at all - and could not go on my daily walk. GPs very sympathetic but took a long time to do anything - could be heart or lungs "and we don't know which specialist to refer you to". Finally I had CT scan and other tests and am very lucky to have had several nasty things ruled out. But am still breathless - though less so than before - and have no diagnosis. Will try again with GP.

graninthemist Fri 15-Mar-19 22:28:06

My husband was mistakenly diagnosed with celiac disease in his 20s, and was on a gluten-free diet for 15 years before it was found that he actually had Crohn's disease. Now in his 70s, he was diagnosed with Parkinson's disease five years ago. We have battled with these difficult conditions for many years, and hope that we can continue to do so without having to resort to specialist care.

Liz46 Sat 16-Mar-19 07:40:16

I knew I was ill but had some trouble convincing my GP. I eventually researched all the GPs in the practice and discovered that one has an interest in respiratory medicine. I visited her several times and when I finally told her I was losing weight without trying, her head came up and she decided on a CT scan. All hell broke loose when the results came out and after many tests I was diagnosed with several serious but non contagious lung problems. The treatment and attention I received from the NHS was excellent and I am very grateful.

I know I am reasonably ok at the moment and they have almost lost interest in me. That's fine!

Brendawymms Sat 16-Mar-19 08:32:41

I have asthma a long term condition and as it is COUGH variant asthma with no WHEEZE and is listed as moderately severe but many health professionals don’t take it seriously. “ you are not wheezing you are ok”
My GP is good, and I try only to see him for my asthma, but feel I’m taking up a lot of his time as my asthma is fairly unstable.

TwiceAsNice Sat 16-Mar-19 19:42:32

I have Diabetes type 2 which zi take oral medication for and Spinal Stenosis which causes me pain and some problems with walking sometimes but I take no medication for as I have a high pain threshold. With my diabetes I have recently gone on a low carbohydrate diet and have lost a stone in weight so hope my blood sugars will be a lot better at my next check up ( it is already well controlled) and that may have a knock on effect to mobility as well. I would be classed as having two chronic illnesses but certainly don’t need any care at all. I am very independent and still work part time in my 60’s

BBbevan Sat 16-Mar-19 19:43:09

I was diagnosed with T2 diabetes 4 years ago. I have no symptoms and keep my BS at a good level with diet. My BP and cholesterol are great. If I went to a new doctor who did not know my circumstances , I would not be diagnosed as diabetic. My own GP says if I continue the way I am ' No further action to be taken '. I realise that if I revert to a 'bad' diet, the diabetes may return. So am I diabetic or not ?

Granny23 Sat 16-Mar-19 20:26:24

I have 2 long term problems - Depression and Restless Leg. I have medication for both which reduces them to a level I can cope with.

My DH has high blood pressure, controlled by medication, Is deaf and has one useless arm after Polio as a teenager. no treatment as nothing can be done for either of these things. He started to develop Dementia (Mixed Frontal Temporal and Alzheimer's) 4/5 years ago - it is now quite advanced - he is constantly confused and needs help with dressing, toileting, even getting in and out of bed. Once he was given a diagnosis he had 6months of free, once a week care/therapy/assessment, then was discharged from NHS care and was assessed by Social Work as requiring 2 days per week of day care and 6 weeks in residential respite per annum. This has not happened due to lack of availability - He has 1 day per week of 'Day' Care from 10.00 until 15.00 and has had 1 week and 2 long weekends of respite in 15 months. Day Care and Respite must be paid for full rate minus 20% for Free Personal Care as we are in Scotland.

No point in complaining as the Services which are promised are over subscribed and budget cuts, staff shortages, closure of private Care/Nursing Homes mean that they are just not available when required. The burden then falls on elderly spouses and or adult Children to plug the gaping holes. Usually best not to spend emotional and physical energy, fighting the system, simpler, quicker and less stressful just to get on and do it yourself.

Gaynormurray Sun 17-Mar-19 13:29:06

I have had a stroke, have type 2 diabetes along with other conditions. Care has been a problem for me in the past . My husband is helpful but it’s not easy for others to understand my limitations. As I look fine

Miep1 Sun 17-Mar-19 14:43:29

I have a long term condition that, I think, began when I lay down for a rest age 17 and was paralysed when I awoke. I can't remember what the explanation was (but would love to know) bit do remember the 3 months + in hospital. In France I was diagnosed with serious problems with my spine and operated on (about 20 years ago now) yet this country (UK) insist that there is nowt wrong with me that a few classes of Tai Chi wouldn't cure. As far have COPD and osteoporosis and use a wheelchair, I don't see that happening! I am in constant pain, cannot walk and the medications I am on don't work. I am fed up with the wonderful NHS.

Bevinju Mon 18-Mar-19 11:05:37

Mum mum went into a care home 7 years ago. She had a visual impairment, was diabetic and at that time, angina attacks. She had previously lived in a warden control home. Carers came in several times a day as mum could not see what she was cooking / eating, and was not taking her medications, but this was not enough.

The first five years were fine. Mum developed compression fractures in her spine, and has had morphine patches for some time, which masked other conditions which were not picked up.

The care home manager said if we were not happy with her care to move her, but Social Services would not allow this, and wanted us to work with the care home, despite several alerts to Safeguarding. I could have red flagged the home last year in a meeting with Sageguarding ( which was as a result of a referral from the Social Worker after mum incurred a serious head injury, that they were not aware of) but the care was improving slightly and we knew mum would not survive a move.

So seven years care home costs costing several hundred thousand pounds, and just over a week ago she was admitted to hospital with jaundice. A scan highlighted a mass which they say is cancer. She is now in a hospice and we can’t rate their care highly enough, but we looking at mum passing away sooner rather than later.

I could quote a whole list of failings about the care home, however it gets good reviews and people think it is one of the better care home!

You should not have to visit daily to check on things, but we have been doing this for some time.

Comments from the seniors have included “so that is why she is yellow” when we told them about the jaundice. Another “her urine is dark because she does nor drink enough” but we now know it was the cancerous mass preventing the toxins from the liver not draining.

My experience is don’t put someone in a care home. You are far better to give up work and care for them yourself, and get support in the community. At least that way you will be happy that they are being looked after.

midi1975 Mon 18-Mar-19 11:38:39

I have high pressure and a heart condition. I have had excellent care and advice from my GP and my local hospital services. Consequently I feel confident and happy living life with my ailments.

GeminiJen Mon 18-Mar-19 12:36:49

A close friend has suffered for much of his life with diabetes. He's in his 80s. Until recently, he managed independently, going into hospital for dialysis 3 times a week. However, he was admitted to hospital after breaking his leg in a fall and suffered complications, resulting in the amputation of his leg below the knee. Through all of this his NHS treatment has been exemplary. The problem now is that he's unable to return to his flat, needs some form of sheltered accommodation and feels he's being viewed as a bed blocker. He feels as though there's a gap between health and social care and he's fallen into it.

B9exchange Tue 19-Mar-19 09:00:56

I would caution GNetters about putting any information on here which could identify you. My medical data is my own and private, and I certainly would not share it here!

mbody Tue 19-Mar-19 10:09:34

I sometimes think doctors should properly review medication regularly and stop some. They should also stop giving out paracetamol and other over the counter pain relief as this must cost the NHS millions of pounds as they won’t be buying it as cheaply as the supermarkets. Also hospital pharmacies should supply medication to patients awaiting discharge far more quickly than they do presently. Waiting for this medication can take several hours when the bed could be used for the next patient What the NHS needs is a supply of sensible older ladies with bags of common sense!!!