National Audit Office

[Ian123]

Having a neurological condition the quality of care will not have escaped notice, well the good news is the government have also spotted all is not well nao.org.uk/report/services-...

[RockRose]

Ah, yes to the recognition, Ian, with thanks, as always for sharing...

A step forwards in clarity...so now I make a profound wish / trust this eventually translates into on-the-ground care...

(personally still waiting for social care to materialise, applied for in early February...and with PIPs at appeal stage...so perhaps all the care will arrive at once, like buses!)

Out of curiosity, I wonder how many of us have been seen by a neurologist...wondering if that would make any difference, in terms of 'being picked-up' by appropriate sources of care, given the new umbrella/network?

[Ian123 in reply to RockRose]

Identifying neurological services as a poor relation compared with other services is a first step when the wheels turn exceedingly slowly.

Positive news that problems inherent within the system are identified for action even when financial competence is the main driver of reform.

[RockRose in reply to Ian123]

Yes, well said Ian, agree wholeheartedly.

[Arianne]

“Considerable further work is therefore needed to make more progress and to achieve better services and outcomes for people with neurological conditions.”

Sir Amyas Morse KCB

[Ian123 in reply to Arianne]

Admitting there is a problem is good start.

[Seascape]

Counting as a long term illness this held my attention

The Department’s mandate to NHS England includes

an objective for everyone with a long-term condition,

including a neurological condition, to be offered

a personalised care plan by 2015

in the seventh month of this year a great number of personalised care plans are in the pending tray.

[Ian123 in reply to Seascape]

Accepting as a long term condition removes the neurological / psychological argument placing the duty of care onto chronic conditions regardless of cause a care plan is action now not hope for the future.

[budgiefriend]

I think if requesting referral to a Neurologist, best to have a look at any info you can about the Neurologist to whom you would be referred. See what their area of interest is, and if they have done any research or written papers about MUPS, PUPS, somataform disorders, or other things that would be a conflict with biomedical research on ME, etc. It's amazing what you find out when you look at the list of papers these people have their names attached to.

I also learned that you have to look at the paper in more detail. Their name may come up only because of some of their previous research that was cited in a particular study or other paper. It may not reflect their views about the conclusion of the other researchers, etc.

I saw one who did almost nothing and dismissed me saying there is no need for further tests. (He only tested my reflexes, had me follow a penlight and touch my nose and such things.)

I had asked to be referred several years ago because of epileptic looking episodes of jerking and shaking, losses of consciousness, collapses, blackouts, and even some bizarre instances (always when very tired and pushing through to do something like get something to eat or drink, do a bit of washing up, etc.

He said I should stop taking my pregabalin, which had nothing to do with these symptoms which predated the start of taking it by a good few years. He also said this:

"The reason people with your illness are sent hither and yon is because we don't know what to do for you" I may have paraphrased this sentence, due to memory lags but it was something to that effect.

The old NICE guidelines about not doing testing which might give us more reason to think we are sick, etc... may have been at work here.

Or maybe he just felt there was no justification to push for expensive tests, since I have a Fibromyalgia diagnosis and was on pain medication which I did not want to stop taking unless someone could give me a good reason to think it was the cause of my problem.

Anyway, looking back, I waited in hope for 3 months for this appointment, had to lie down on the benches in the hospital waiting area and was shaking during much of that time, only to get this rather patronising and dismissive result. It did really knock my sense of optimism and trust.

Also, I have had subsequent doctors look at my records and say, "you have been seen by a Neurologist." like checking that off the list of diagnostic or treatment possibilities. I am dismayed that it is now coming down to that.

So, yes, if you can get a knowledgeable Neurologist and maybe even some imaging testing etc. Some do get these. I don't really know why I didn't, but then I am still only carrying a FIBROMYALGIA diagnosis from 2007.

[Ian123 in reply to budgiefriend]

A neurologist that could not perform a standard Romberg test before pronouncing non specific neurological symptoms told me as much about the level of competence I should expect than any written report.

Sometimes the selection process of medical support needs a hands on approach, spotting a lemon is much easier when it's right in front of you.

Second opinion time when there is no trust in the first one but only if the effort will serve some useful purpose.

[budgiefriend]

I'm okay with your 'spotting a lemon that is in front of you' idea, except it seems there are two disadvantages to having seen the lemon instead of weeding it out by looking at other evidence.

1. You may have to deal with an attitude or insulting treatment/comments, which can really affect you, emotionally.

2. You may wind up with some business on your written notes about their stupid recommendations and subsequent questions into your non-compliance with treatment or diagnosis offered to you.

When dealing with the DWP/ATOS and the like, this has already come into tribunal questions in my case and prolonged a barrage of nasty questioning by the only doctor on the panel of three. It seems that thinking for yourself and deciding what is best for you is not acceptable, but rather suspect and worthy of disdain and suspicion...(evident malingering or just noncompliance).

I have been careful but feel so frustrated that the few referrals I've been able to get a GP to make resulted in some very unpleasant encounters and only one or two positive experiences.

I often think I am a magnet for toxic people in positions of authority, but then I read what has happened to others and realise there are a lot of toxic professionals about.

[Ian123 in reply to budgiefriend]

A lot of toxic attitudes and few that believe patients have a role in their own care / treatment. Fighting battles with the toxic takes more energy than can be justified, removing patronage and alerting others what they can expect is a less stressful approach in my experience.