opinions welcome

[devientenigma]

If you were to have an assessment in your local authority and the outcome had no recommendations, then you had a similar assessment still done by the NHS out of borough. Are your own borough obliged to take on the recommendations? or can you insist on someone else to see to these?

meant to say TIA x

Hi Devientenigma, I think it would depend what sort of assessment you are talking about. If it was a medical condition, say, then in theory if one area says you have the condition, all would have to agree. If it was a 'service need' assessment, then one area could come to a different conclusion than another because of local criteria.

Obviously, in the case of a Statement, the receiving County has to provide the Statement as is, but they are also entitled to reassess.

I'm interested in this too. DS2 has very severe Hypermobility syndrome. 3/4 of my DC's have been dxd with this at a very young age, but he is the most severe.

I have Hypermobility syndrome, and do does my Dbro.

My Mother has also been dxd with Hypermobility syndrome.

I am paying £300 for DS2 to be assessed by Prof G. Privately for EDS in May.

I truly believe that given all the additional symptoms we have in our family, that we all have EDS. DS2's assessment is to see what type of EDS he has, really, as we are worried about vascular involvement and POTS due to issues we all have...

If Prof G makes any recommendations (he is out of my PCT both private and NHS), would the local NHS have to follow them? Would the school be obliged to follow any recommendations?

Questions, questions...

Thankyou for that lougle, it was much appreciated. Mouthy as EDS is a medical condition and the NHS out of borough diagnosed it, it would mean your PCT has to accept, would that be right lougle? Whereby if it was a private dx they wouldn't? And if you needed a service it would be assessed locally? Hope thats right and gives you the answer too. I think based on the correspondance I have had recently they may follow recommendations but it's quite cagey if it's because they must iyswim.

I think the long and Short of it is that if they felt the diagnosis from whichever source was accurate, they'll accept it and be grateful that they don't have to spend money diagnosing.

If recommendations tie in with typical local services for the same situation, they'll accept it.

If the recommendation is costly and they can meet the same need cheaper, or they can demonstrate that the need could be met by a community voluntary organisation or family, then they are within their rights to say 'you should use x service'.

They have the overall responsibility to make sure services are available, but they don't have to provide it themselves, necessarily.

and what if you had 2 NHS conflicting diagnostic opinions? one without recommendations and one with?

I guess it would depend if the non-recommending NHS body were able to rationalise and justify their decision. For example, if the criteria for EDS contained 8 essential features, and one NHS prof. felt that the patient met 3 of them clearly, 2 of them most likely, and the remaining 3 were equivocal, they may decide not to diagnose.

If another prof. felt that they met 5 of them clearly, and the remaining 3 were slight findings, they may diagnose.

I'm going private to see Prof G for DS2, though, as he doesn't see DC's on the NHS.

So it might be that because I'm paying privately for DS2 to see Prof G, my local NHS may not accept the dx?

Even though Prof G also works for the NHS but seeing adults?

Even though he is well respected in this field?

Bums. It's important for me because DS2 is at risk of being left in a wheelchair, his Hypermobility is so bad (8/9 on Beighton scale, would be 9/9 if the Hypermobility hadn't caused kyphosis in his spine that prevents him from bending to touch the floor...)

And I have to know whether he has vascular involvement. But my local NHS, whilst happy to dx as Hypermobility syndrome, and even (now) provide hydrotherapy, they don't do the tests to see if it's EDS or which type, and they won't refer on for these tests either.

I just want to know if DS2 has vascular involvement or not!

If it's a budget issue, they will accept the dx. It's if it is a conflicting professional opinion that they won't. However, even with the dx, if they don't fund certain treatments, you won't get them.

Cancer is a good example. Some trusts fund drugs to prolong life in terminal patients, others won't. The dx makes no difference.

ok, so if it was a conflicting professional opinion but they quoted from the opposing report to prove conflict and contradiction with the opposing profs report, where would that leave you?

(hope I explained that ok)

It would leave you with two professionals having a bunfight. I don't think one Health Authority can compel another to act.

Using the cancer example, again.

Authority A says 'Herceptin has evidence of prolonging life in Her2+ patients, but it's very expensive. We'd rather replace an extra 40 hips each year and 1 heart bypass, because that money will lead to almost full recovery in 41 patients, instead of the Herceptin therapy which will only add 18 months survival to 20 patients.'

Authority B 'Herceptin is vital because it helps people have longer to come to terms with the situation and make plans, etc. I recommend Herceptin for Patient X.

Authority A 'That's nice for you. We don't fund it.'

thanks for that lougle.

another Q if you don't mind answering or anyone else for that matter.

what if authority A was a clinical psyc covering a wide range of issues but authority B was a specialist psyc in a specific field and well known for what they do?

iyswim x

Well then it would be for Authority A to recognise the standing of Authority B and concede that their specialist opinion was sound.

It still wouldn't compel authority A to provide the therapies/resources recommended by authority B though, because each authority is able to prioritise resources and service provision as they see fit.

I guess it's a bit like what we're going through at the moment in a way. DD has CP. We want her to have the SDR operation in Bristol (40 miles away), one of 4 centres offering SDR in the UK. SDR in Bristol is only available NHS (not private). She has had a physio assessment to assess her suitability for the op and we are waiting for the report. Whether or not she is suitable, our PCT will not fund it. It might prevent the need for further surgery when she is older, but our PCT will not fund it. It could improve her quality of life, but our PCT will not fund it. It will more than likely remove the need for regular wheelchair upgrades, etc, but our PCT will not fund it.

We are going to fund it privately if she is suitable, but it will still be NHS waiting lists and so on. Madness!