NHS 'cant cope' with chronic multidisease patients

[gila]

not about HMS as such... but amongst other things calling for what most of us also dearly wish for... a doc that could oversee our health care as a whole, lead us through the maze of involved specialists... rather than us mostly having to lead our gp's/co ordinate our health care teams...

http://www.bbc.co.uk/news/health-18007951

[AnnaH]

I definitely related to this article, although my care at the moment isn't too bad. I'm slightly annoyed that rheumatology have decided to ignore me for the moment, given that I have bone and joint problems and I would have thought that that's what rheumatologists do. Orthopedics aren't interested because they can't operate on me.

In fact the only specialty showing an interest in me at the moment is endocrinology, as I am recovering from osteomalacia (adult rickets). And I can't get a referral to the pain clinic because they only take consultant referrals, and my endo is not considered qualified to refer me (has to be rheumy or orthopods).

So having worked my way round the entire hospital, except for the prostate specialist and maternity, I'm now back with my GP and effectively no consultant input. And my poor GP does act like he'd rather have some higher authority to call on, for advice, if nothing else!

I do get a little fed up of having my multitudinous problems treated individually too, especially as one impacts on the other. For instance, I have chronic asthma, making me very susceptible to chest infections. When I get a chest infection, I cough; when I cough I dislocate or sublux ribs, leading to severe pain.

I also sometimes feel that we patients have a rationed amount of diseases and once we go over that 'quota', we are treated like we're doing it on purpose. I've even been referred to a psychologist for hypochondria, only for it to become quickly apparent my anxiety was about real stuff that was actually happening to me, rather than imaginary stuff. I don't think my imagination goes that far! (the shrink did diagnose and treat me for Post-traumatic Stress Disorder, resulting from several, life-threatening, medical events; so the referral turned out for the best).

I am not sure that complex patients necessarily need hospital consultants though, just a key doctor who is prepared to spend time with us, sorting out the mess of different diagnoses and talking to us about how it is affecting us. What we really need is time, which is generally in short supply in the NHS these days. But without it, mistakes get made and patients start suffering mental health problems on top of their physical problems, like depression, anxiety and like me, PTSD.

[Spireite]

I was only talking yesterday to a friend with a project manager small business saying how I have to project manage my own health care. So yes I'm glad to see more publicity for this problem.

I too have had problems with the disinterested GP saying I'm only allowed to see one specialist at a time. Actual needs just don't come into health care. Similarly when seeing a physio, you are only allowed one problem joint at a time which of course isn't the way it is with a systemic problem like a connective tissue disorder. They don't seem to be taught that patients/bodies can have more than one misbehaving bodypart at a time, so I think the issue starts with their education.

I do vote for some type of doctor, that could specialise in this area and project manage a patient's care. This doctor would need to understand that one problem impacts another and so they would need to understand them all and be able to prioritise. A tall order methinks!

[sheppeyescapee]

Agreed there. Our local orthotics you have to have a separate referral for every misbehaving part, rather a waste of office time for all those referrals!! Another bug bear of mine is mental health services turning down people purely because they have an ASD, because somehow you aren't allowed to have an ASD and mental health needs

[madmum]

I agree. Even orthopaedics you have to see different doctors for different parts. Then you get accused of wanting different opinions.

[AnnaH]

My stupidest situation was a visit to the "Lower-limb physio". I asked her about my foot problems to which she replied "I don't know too much about feet, I just deal with lower limbs".

So that's a specialty that deals exclusively with the bit of your legs between your knees and your ankles. No wonder the NHS waiting lists are so long.

[mazza111]

I read some of these and think how lucky we are, ok we don't have a diagnosis as yet. But daughter has been seen by same doc for her knee and ankle, patella alta and spiral fracture. She was referred for physio on her knee, and physio is going to do some physio on ankle too. Surely that's the way it should be rather than being sent here there and everywhere.