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Old thread, 2019.

TwiceAsNice

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

But you do need care for your diabetes, if you take medication. You are entitled to annual reviews, including blood tests, which counts as care.

I have 2 long term health conditions, one diagnosed in 2005 and the other in 2014. The first, a neurological condition needed frequent neuro physio sessions to try to aid recovery. When I came out of re-hab I was told there was a long wait to see a neuro physio so paid to see one which seemed to get me an NHS physio straight away! Over the years I have been on and off waiting lists for physio, but managed because the society for the condition that I has offers a bursary for 2 hrs specialist physio every 2 years. This has enabled my deterioration to be slowed though not stopped. Neurologists that I have seen have been very patchy. Some had no experience of dealing with the condition and frequently wanted to labvel me as having something more common! Arthritis, diagnosed in 2014 has been mainly ignored by everyone. I recently worked out a pathway to alleviate the pain which is 90% effective. I need a branded pain relief gel which I find brilliant - but my GP will only prescribe me a generic gel as it is cheaper - but doesn't work nearly as well!! They are more prepared to prescribe 3 tubes of the cheaper stuff than 1 tube of the more expensive stuff which I fail to believe saves any money at all!

I am in my late 50s and have several long term conditions dating from my mid30s. I taken very little medication and manage symptoms with EFT, light exercise, diet, massage, TCM, pain killers and supplements. I get little support feom my GP practice and the doctors seem to know very little about most of my conditions, even though they are all common. Last time I contacted them I had to call 75 times to get through and then wait 45 minutes to get through. The doctor forgot to give me the inhaler I requested (for asthma), and I have had a sinus infection and painful ear infection - the reason for the appointment - with no treatment ever since. It is too difficult to keep chasing the GPs up for treatment.
I had an endoscopy a week ago, the out patient process could not have been handled better, but I am still waiting for the GP to contact me about accessing the antibiotics I need for heliobactor.
I find the GPs to be about 20 years behind regarding medical conditions such as high cholesterol, and many relevant blood tests are not available on the NHS, so I treat myself with lifestyle medicine where I can, and cross my fingers that the GP will actually contact me, and maybe prescribe antibiotics that will help both the heliobactor as well as the ear/sinus infections.
I have been on a waiting list to see a specialist since 2020 for a nerve issue. The hospital told me that no one is being seen if referred after 2014. I am about to go privately.

I was diagnosed with CRPS in 2005 and Ménière’s just last year, the 2 combined have severely limited my mobility and I’m also now affected by phases of extreme anxiety ! I’m on various meds and things are very up and down, I hate having to see my GP about ‘yet another problem’ and I regularly put things off until they become unbearable, life is manageable but my daily activity has become very restricted, on my good days I try to focus on keeping fit at home, my mindset however is often very pessimistic, some days are a real battle and I find it a struggle to stay positive.

My long term condition is a skin condition, that varies but my body is covered in scars, and it being our biggest organ has been my health concern through many years. Had lots of different treatments, medicines and lotions but nothing ever seems to work long term.

I was diagnosed with M.E./C.F.S several years ago and it has become a big part of who I am. For years I fought against it and found myself also fighting depression as a result. Since there is no known cause or treatment, I just have to take each day as it comes. I have learnt to accept that I must live within my limitations and if I have to spend a few days in bed, that's ok. The hardest part is not pushing yourself too far on the good days and ending up right back where you started. I live in hope that one day a reliable treatment will be found.

My 85 year old mother in law has a few chronic conditions, which are managed with medication. However, as things have progressed, we find it a constant struggle to get her appropriate support to help her maintain her independence in her own home.

I have suffered from Crohns Disease All my life It’s a condition that I have manged and get attacks piratically when under stress. I understand and know the triggers and avoid them when I can. A few years ago, I began to get heartburn and reflux it got worse after my babies were born. I went to the doctor over and over. When my husband was dying with cancer I was spitting blood. I went to the doc she dismissed me and said it was down to my mental health and all in my head ( I suffered anxiety) I told her I was spitting a blackish blood, she just shook her head and said give up tea you are fine its all in your head please don’t waste my time . After my husband died I got a 2nd option I was sent for test. and found out I had Barrett's Oesophagus and a very bad case I had cell changes and it was now pre cancerous. Since then I became very ill Again I was sent away and dismissed I spoke to my nurse specialist who did blood test and found my vitamin B6 and 12 were deficient she told me people with Barrett's Oesophagus cant absorb certain vitamins and my doctor should have known this. I cant change doctors as I all the doctors in my catchment are have a five year waiting list . I don’t even bother to go see them as they have written me off as a” nutter “ because of my mental health

I have suffered with depression/anxiety most of my life, and also physical ailments of COPDS and arthritis. I am completely overwhelmed at the daily amount of pills I have been prescribed. I gradually took myself off anti depressants and sought other natural treatments like meditation and mindfulness. I also refuse the doctors orders of 2 pills 3 times daily for the COPDS and arthritis and will only take them when necessary. GPs need to stop handing out pills like sweets.

I have had rheumatoid arthritis for 46 years. It has been a very aggressive type, I had both knees replaced in my mid 40's & hips at a later date, I am now housebound. Life is difficult. I have other health problems due to arthritis not being controlled. My hands are severely twisted. I have climbed the ladder of medication to the new biological drugs but following developing cancer it was not recommended I went onto another biological, and therefore my joints are now in a very bad state. I hate having to use a wheelchair all the time. The NHS is in such crisis it is very difficult to get GP appointments.

I have COPD and Type 2 diabetes i do not need care in the house and my conditions are checked regulary by a practice nurse

My step son has Type 1 diabetes. He found out when he was a teenager, but he obviously has his ups and downs, and as recently as last year he had an admission to the hospital. Its very worrying, but we try to make sure he still lives a normal life as much as possible.

I have a long term condition. I knew for years that something was wrong but was told time and time again that I was fine. I began feeling really poorly and they ran a lot of tests. They then realised that my iron levels were far too high. I was diagnosed with hereditary haemochromatosis where you absorb too much iron. This can eventually lead to cirrhosis of the liver, diabetes and other conditions. Luckily I was diagnosed before the iron could do too much permanent damage. I was treated by venesection until my levels were in the normal range. I now have a blood test every three months and have to have a venesection if the levels get too high. I have a dedicated nurse and I must say that the NHS have been wonderful

My son was diagnosed at 18 months old with Coeliac disease. It was very challenging to start with whilst we understood the condition. Eating out can be very frustrating as there are still so many restaurants that either don't understand or can't guarantee cross contamination. That said, i'd rather they say this as I know my son won't get ill because we simply won't eat there. My son is very accepting of his condition and always double checks with us whether or not he can eat something. The difference in him since changing his diet has been amazing but if he does accidentally have something he shouldn't, his symptoms are just terrible and I feel so helpless!

i am gluten intolerant and have irritable bowel which i believe are connected, because if i eat gluten by mistake or sometimes deliberately (my last weakness involved a greggs meat mince pie, which i did suffer for later, but there isnt much choice other than fruit when you are eatting on the hoof) - i find that i have a flare up.

There are certain conditions that the doctors cannot treat at all much as they would like to, often rare conditions. Medical science hasn't the money or time to investigate everything much as they would wish to help.

I live in Wales so this doesn't affect me. I have a number of long term conditions and no true diagnosis. This is very difficult as it feels that I am not legitimate and there is minimal support

*I suffer from back pain and problems with blood pressure for years. The Doctors in my Surgery who has since retired a few years ago was brilliant.

However, since they left, it is a nightmare to get an appointment.The new service of ringing in on the day to book an appointment and waiting for the Doctor who will assess you on the phone to ring back is such a nightmare and a waste of time. Several time while on the queue waiting to be connected to the receptionist the line gets cut off and end up been on the bottom of the queue again. At times, the Doctor or receptionist forgets to ring back and you are waiting all day only to find out they have forgotten.

Howevere, I was very impressed with the speed I had an appointment when the Doctor suspected I might have a very serious medical conditions due to the severe weight lost and ill health.I was grateful as the Doctors found something else and I had surgery straight away and it resolved the problems. Thank God and the NHS for that!!

When my mother was last in hospital, she was treated, not cared for at all. She frequently smelt as she wasn't washed and I complained about it, not least to avoid the risk of cross-infection as she was also scratching. My complaints were brushed off and eventually she was discharged without consultation to me.

Luckily she is in a care home that understands her dementia and healthcare needs, but her care plan stipulates that she avoid hospital at all hospital as it's too dangerous there and would just be traumatic for her.

1 long term condition finally solved by an operation but the othr is arthritis. Controlled at the moment but suffer from flare-up's that may get increasingly worse

My husband was diagnosed with Bi Polar 30 years ago. At first life was difficult with several suicide attempts and numerous admissions to Psychiatric Hospitals.
I had to cope with two young children and a very unwell husband. The care he received was wonderful and over time the medical staff have found the right medicine to control his mood swings.
The children have grown up and my husband hasn’t been admitted to hospital for over 10 years.
Life is good!

I ve always been fit and well until 5 years ago, I was working 12 hour as a staff nurse in a&e when i fell ill, with four little ones at home we had no choice to fight on, 2 years after i fell ill my husband had to give up work, to care fulltime for me and our children, social care stepped in and were great, but with money and time restraints helping us was low on their list. I became wheelchair bound, housebound and sat at 36uear old with pressure sores. The social workers, occupational therapies are wonderful people they fight the system on our behalf but sometimes families with long term chronic diseases dont get the healthcare we need.

I suffer from generalised anxiety disorder and mental health has taken years to get the correct medication and in Scotland you wait months for therapy! It’s ongoing even know and living daily is a constant battle & struggle with myself. Although my son lets me going and medication to keep it at bay I feel it will never go away! No matter what I’m prescribed! Mental health needs more awareness among the young and should be taught in schools and more done about it in the future.

my partner was diagnosed with rheumatoid arthritis about 4 years ago and apart from medication we get no help what so ever,he cannot get a normal job as he never knows when he will have a flair up ,im left to support the whole family on my wages alone,i was a carer but now iam a support worker on a low wage,i also have 2 prolapse discs in my spine and im in pain most days but i cant afford to take time off work ,iam in the same boat as a lot of people and its just not fair