F.E.A.S.T's Around The Dinner Table forum

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BattyMatty_UK
I noticed this morning that, since 2009, UK patients have - in theory - been able to choose their own consultant / clinician / hospital. I just wondered how this works in practice - for example if a family in the North of England insisted that they wanted their ED child referred to Janet Treasure et al at the SLAM, could it be done? On the NHS? Or are there caveats as long as your arm that make this kind of thing fail miserably in practice?

Just curious.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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MarcellaUK
Sorry Batty - it doesn't apply in psychiatry From the NHS Choices website

 

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Is hospital choice offered in every case?

A choice of hospital is available for most patients and in most circumstances. Exceptions include emergency and urgent services, cancer, maternity and mental health services


(Highlighting mine)

This MAY change in the future, but in the current climate of financial restriction it's going to be difficult to get it to actually mean a lot.
Fiona Marcella UK
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BattyMatty_UK
Thank you, Marcella. I thought it sounded too good to be true.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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MarcellaUK
This is an interesting little paper which debates some of the challenges and opportunities which could come with more choice - and which, like nearly everything I have ever read, assumes that it would be the patient, rather than those around him/her that would exercise and benefit from/be harmed by that choice http://bjp.rcpsych.org/content/191/1/1.full.pdf
Fiona Marcella UK
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Onemoremum_UK
It is total nonsense - essentially it means if you're going to have a 'proper operation' you might be able to be referred to the private sector. Choice in mental health is virtually non-existent, as it is for other services such as maternity, because the private sector aren't lobbying as hard to get in.

Rant over

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BattyMatty_UK
I feel too weary to rant, dear Onemoremum and Marcella... But I can't say it comes as a surprise...

xx
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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emilyshUK
In the same way as our Private Medical cover didnt cover us for mental health issues, we couldn't get a referral to the Consultant of our choice because D's illness was a mental health issue. It sucks.
Sue Shepherd
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BattyMatty_UK
Our private medical cover covered us for a measly £500 per year for mental health. You don't get many private sessions for that!!! Yet at the same time I was seeing a private ENT consultant about an inner ear problem and there appeared to be unlimited resources...
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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anothermum_uk
hmm is this because things like end, or surgery are considered to be (more or less if complications don't arise) finite? There is treatment and a defined end to that. Mental health is much more open ended and therefore less profitable to the private companies and insurance providers. 

The fate of the NHS is a worrying prospect. It has many faults but the alternatives make me shudder. 

If I were to consider that another nhs provider could be more suited than the local I would ask them directly. Your GP, your local hospital team, and the one to which you'd like to be referred. Consultant secretaries are often the gatekeepers before you can talk to a consultant direct, but they also really know their stuff and can be really helpful in showing the way.

The other 'way in' might be through a trial or a study - especially at the Maudsley/King College

good luck
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DolphinUK
Batty, this is a really interesting discussion. Our situation with D at the point when I took her to see the GP with all my concerns, was that she would have been offered a self help group and that was it as she was considered "not bad enough" to access specialist services with BMI of 17. There was no other provision available, certainly none that the GP was aware of. It was only because I had some knowledge through talking to colleagues that I was made aware of a wonderful place where D could get the help she needed. I shudder to think about other sufferers who may not have had this help?

It truly is shocking to think that we have to "wait" until our loved ones are so sick that it is immediately life threatening BEFORE they receive  the help they so desperately need and should be offered?

At one point, I even thought about putting D in the car and driving hundreds of miles to the Maudsley and camping on the doorstep!!! but even then, they would have been unable to accept her...

I still get angry about this and I dont think that I will ever feel able to stop feeling angry.
You can never cross the ocean until you have the courage to lose sight of the shore
Christopher Columbus
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anothermum_uk
Oh I hear you on the frustration of a BMI of 17.
I think I just cried in front of the gp and begged for help before it was too late.
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DolphinUK
swuk,

The only way to work through this is to raise awareness and keep campaigning for appropriate treatment for eating disorders. Eating disorders are life threatening, severe illnesses and need to be taken VERY seriously by all. I am raising awareness in my own little community, and I am not sure how much this will change the course of ED treatment? But, I will keep on raising its profile as this is something I can do. 

xxx
You can never cross the ocean until you have the courage to lose sight of the shore
Christopher Columbus
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melstevUK
Batty,

This is a difficult one because the issue is about patient choice, not about parental choice.  However, if you could get s to request a referral himself to Janet Treasure's team, then it might be possible if the GP was supportive.
The difficulty would be at the other end - because there might be no obligation to take patients from out of area.  But as swuk says, speaking to the consultant's secretary can help with this one.
Believe you can and you're halfway there.
Theodore Roosevelt.
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BattyMatty_UK
He has an assessment locally next week, but I think they'll be focusing on the co-morbid stuff (depression and isolation) as I imagine the ED is too advanced in recovery to worry them. This week he's been fine and cooperating with my New Year Plan brilliantly. Long may it continue!!!

PS This assessment appointment came through in just 2 weeks from seeing the GP. Contrast this with when we first went to see the GP in 2009... several times... before being referred and finding ourselves on an 18-22 week waiting list for an assessment!!!!
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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MarcellaUK
I don't want to be too much of a Debbie Downer and I agree, your treatment by the GP him/herself this time has been MUCH better and more timely than when he was first unwell. However one wheeze the hard pressed (and I mean it, I've never met a lazy NHS clinician or manager) authorities now use is to have systems in place to offer very timely initial assessments. Whether the waiting list AFTER the initial assessment is just as long as it ever was is another matter.

The waiting lists for adults in our local specialist ED team are back to at least a year, if not more. They DO see people who are not at death's door and their criteria for inclusion in the service are much wider than many, if not most, which is great. However this means that demand far outstrips resources. Children and adolescents and those who are very sick are, quite rightly, prioritised, meaning that it can feel, for adults who are doing better and working hard on their own health, as if it isn't worth trying to get better as that only puts you further down the waiting list. None of this is the fault of the clinicians who are working hard both to see the patients on their lists and to campaign for better awareness and treatment but it can lead to friction between them and worried patients and families.

I really hope that this doesn't prove to be the case with the services your son has been referred to Batty and that work can be done to ensure that it doesn't happen in the future to anyone. That's why I started my petition - there's still time to sign it if you're in the UK
http://epetitions.direct.gov.uk/petitions/34775
Fiona Marcella UK
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melstevUK
Marcella,

But doesn't the fact that Batty's s has been under ed treatment already as an adolescent automatically put him higher in the list than if he was being referred for the first time? 
Believe you can and you're halfway there.
Theodore Roosevelt.
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MarcellaUK
It will depend on the services where he is. As I understand he does not qualify for the specialist ED service, and has been discharged from CAMHS rather than transferred to adult services, so I expect not. That is not to say that he might not be lucky and that services may not have the huge waiting lists that exist in other places. It depends on what is available locally and his age may be an advantage as quite often young adults are prioritised using "early intervention" criteria.
Fiona Marcella UK
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BattyMatty_UK
He was discharged from camhs and not transferred to AS because it was felt "more helpful for him to focus on getting his A levels and into uni than taking up time and brain space with further treatment".

And the nurse said "I can't see any reason why he wouldn't be ready for uni in September"...
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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