“The health professionals looking after me work with ... - NRAS

NRAS

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“The health professionals looking after me work with each other in a co-ordinated fashion to manage my RA and other long term condition(s)."

Ruth-NRASRuth-NRAS252 Voters
74
Disagree
57
Agree
46
Strongly disagree
32
Undecided
22
Not applicable as I do not have any other long term conditions apart from my RA
21
Strongly Agree
19 Replies

Because I don't and can't have any medication [because of allergies] they won't see me yet I have private health insurance. Both knees are on a torsion inwards and both feet go outwards and the muscles pulling are terribly painful. Where is compassion and empathy today in the NHS or anywhere? RA and OA and possibly fibro.

Hello skeggy, can I ask you what allergies you have and is this the only reason why you can't be seen yet ?

The reason I ask is because I had some awful allergies for over 10 years prior to RA. I had Urticaria/Angeodema which meant I was allergic to all sorts of foods and some creams and makeup and even water on my skin and since being on medication for RA all those problems just disappeared. That's because both Urticaria and RA are immune system based. I just wondered if you suffer with the same problems as I did.

I also have damage to my feet/ankles which occurred before I was put on medication to control my RA. I have difficulty walking because of this and it affects the muscles and tendons in my legs too.

I look forward to hearing from you as I would love to help you a bit. June xx

I have an A4 sheet of allergies and intolerances. I am starting a new question to see if anyone can help me after seeing the GP just now. I can send them privately.

Andrea72
Andrea72 in reply to beauty96

I am the same as you allergic to everything and I can't have ant inflammatory meds because I have a blood condition. The NHS don't do compassion you are just another patient. Hence why I have had active RA for over two years and nothing working! Get so frustrated. You have to wait so long to see specialist then ages for new meds and at least 6 months to see if they work and so it goes on :-(

I find the individuals in the health care service are amazing, but its such a large organisation and in no way joined up. I see my consultant once a year and have no access to Rheumy nurses etc and have to book an appointment with the GP to ask for assistance. I have asked MANY times for a care plan (eg what I do when having a flare etc) but no one has contacted me back over the past several months-hence my marking.

Thank goodness for this forum. :-)

Ailsa-NRAS
Ailsa-NRASAdministrator in reply to KylaC

Hi KylaC

I need this data for a presentation I am doing to those involved with RA research into co-morbidities (other conditions alongside your RA). Sorry to hear about your lack of joined up care - have you got our relevant booklets which have how to manage flare information? Do ring our helpline for support when you need it.

Ailsa (CEO, NRAS)

KylaC
KylaC in reply to Ailsa-NRAS

Alisa, yes thanks....the forum and website is a lifeline. the helpline were also amazing when I was first diagnosed. thanks

I have very few complaints about my care for RA and other medical conditions. Each consultant I see is aware of my other health conditions. The only problem I have found is when I had a spinal operation through the NHS but done by a specialist consultant who mainly worked privately. He saw me at a private hospital and that is where the operation was done.

The private hospital has not reported back to my orthopaedic team in the NHS and sometimes medical professionals are not aware that I have had a spinal fusion. This has become a problem now that I want my medical team to refer to previous xrays done at the private hospital of which they have no record. I am going to have to write privately to the consultant to ask him to compare the past X-rays with the current one.

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Hidden in reply to joan_w

I have had a similar experience. I had to go to another hospital for my spinal op as my hospital doesn't have a spinal surgeon. My x-rays and MRI scans are not available for inspection on the local hospital database which is accessed by other members of the care team

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My oncologist contacted my rheumy and my respiratory consultant. Rheumy wasn't much help as she wanted to know what chemo drugs I was going to take before advising if I should stop my RA drugs. But she worded it so onco didn't understand her. Respiratory consultant bent over backwards to make sure my lungs were kept clear and well throughout. They try their best, but sometimes they misunderstand each other. Then there's a mix up, so I have to be the mediator for them!!!

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I think it is a terrible shame that a more holistic approach is not taken for patients with long-term illness given the incidents of other disorders. There is a wealth of expertise out there which is difficult to access unless the patient themselves are aware of existence and request referrals. As a result, too much of our treatment becomes about crisis management and therefore, more costly to the NHS.

I recently reached a point at which I hit rock bottom both emotionally and physically and was, quite frankly, suicidal. My relationship with my children had broken down and all of us were experiencing acute depression and trauma.

I was unable to return home for 4 months following ankle surgery because of the situation with my daughter. This, in itself cost the NHS thousands of pounds. Once home the situation worsened and it was only at that point that I was eventually referred to my community rehabilitation team.

In the 15 years since diagnosis this was my first experience of witnessing the potential of a working team in action. The lead nurse pushed forward a referral for CBT, (Which I strongly believe saved my life) an OT came out to reassess my home and as a result adaptations are currently being processed; Physiotherapy was started; advise was given on weight loss, an appointment with the pain clinic was put in place and follow-up appointments with the spinal surgeon were made. Support was given for my daughter to find her own accommodation which has made a huge difference to both of us but most importantly, I felt that there was a person, a human who was caring, local, accessible and knowledgeable of the services available to me and willing to act on my best interest.

Having had this experience has impressed upon me the importance of regularly revised care plans and joined up care with one central co-ordinator to interact with GPs and all the other services. Far from being a costly venture, I feel that it would save a considerable amount of money in the long run.

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My GP referred me to the community mental health team a while ago for CBT when I was struggling to accept RA, and she had a response from them saying they had referred me to the consultant psychiatrist - about which she was baffled. He finally wrote back to her saying that he didn't need to see me but reccommended a type of anti-depressant for me, having clearly not read my case file at all. My GP was furious and I have since found another way of getting CBT from an organisation that was set up to advice alcoholics and drug addicts. A large proportion of this charity's work is now providing counselling for those with long term conditions - which is not what they get their funding for. The community mental health team have met with my GPs and explained that they are secondary provision despite the term community in their name. So there is now no NHS provision here for people who have secondary psychological problems/ depression with chronic illnesses - which the GP and I feel is very sad.

I voted incorrectly it should have been disagree