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I understand that the UK National Health System has set a goal that everyone with a long-term condition be offered a Care Plan by June of 2010.
Has anyone approached you about this?
Have you requested a care plan?
What do you think of this idea?
If you have a care plan already, has it helped you?
We would love to hear what you think of this idea.
Thank you,
Joyce
I have to admit that I'm not sure what a 'care plan' is so I guess I haven't been asked about it in those terms. But I am screened for almost everything possible at least once a year and have a meeting with my consultant. My GP is also very thorough and will take the chance of checking blood pressure and things when she gets me in her surgery. I feel very cared for by our wonderful NHS when it has to do with VHL.
I don't seem to have much luck with my gp's on the British NHS, they don't seem to believe me when I say something doesn't feel right.
Hi!
It is my son who has VHL, we haven't been asked about a care plan. To date, I feel that it has been myself and my husband who have managed my son's care - (presuming that by care plan you mean the organising of scans, when different symptoms occur referal to a relevant consultants etc?) as I keep a diary of all my sons scans past and present, results, next appointments, surgeries and treatments, along with all his consultants contact numbers. We have recently moved, and I am now in the process of speaking with our new GP who seems to be interested in VHL although he has only read about it and never, 'til now, met anyone with the condition!
This is something that we are trying to address, as the NHS, as fantastic as it has been, is quite a minefield to negotiate! Neurologically my son is well cared for as are his eyes, CT scans for his kidneys etc and urine test for pheos are also organised - so my problem? It is that I feel that we are in a situation that should a problem arise regarding his kidneys, for example, the way the system works is that we end up being re-active instead of pro-active - not a good thing.
If there is talk of care plans being put into place by 2010 it is something we would like to know about. I shall speak to some of our consultants and GP to see if they know anything about this.
I've been to my GP today to check the progress on my scar from my recent operation but while there I showed her this discussion and whether there was going to be an introduction of care plans for NHS patients in the UK. The response I got was - there has been nothing mentioned - they aren't aware of any such plan being introduced - doesn't mean to say it won't be - but the nhs changes so quick that anything could happen.
so I'm guessing that is a general No
Hi,
I'm not really sure was is meant by care plan but I now go to the VHL Clinic at Guys Hospital (London) once a year and they do all the relevent tests in one afternoon, I don't seem to have much luck with my GP but if I have any problems in between my clinic visits I can phone my gentic counsellor direct and she refer's me to the relevent doctor. I've recently lost some feeling in my right leg, so I phoned her and she arranged for me to see my neaurologist the next day and I had an MRI scan within a week. I've always received excellent treatment from the NHS and really couldn't fault it.
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