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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.
Showed my gp this post and as far as they are aware there is no long term care plans and no mention of one coming into force but they did say that rules are constantly changing.
I must admit that I have continuous bad luck with my yearly tests as I'm forever having to chase them. I had to chase yet again this year for them to be done, yet to turn up on the day and only have my eyes checked and pheos, noone had booked me in for any scans. Apparently this is the first time they've missed me off according to them but I have emails and letters that prove otherwise. I'm just so fed up of it now its just a constant battle for appointments.
Chin up to my friends across the pond. Just so you know, any difficulties you've described are EXACTLY the same problems we've encountered over here in the US.
We have to proactively manage our health care. Our doctors are only reactive. In 25 years of VHL, I've never once had a physician call me up and tell me it's time for my annual scans. We have to educate and direct our primary physicians and tell them what scans to order and when. We have to chase the results and get second radiologist opinions. If we don't tell our surgeons that there is a risk of pheo, it won't be tested for (this has happened to me 3 times, even at the very best for-profit hospitals).
Just wanted to let you know you're not alone.
I agree that being proactive yourself can be the difference between being happy with your GP, on time for scans, and on top of this disease.
When my son was still being treated/monitored by pediatric doctors, the doctors actually did call us when it was time to schedule scans. They also called us after hours with scan results.
Now that he's being followed as an adult patient, it is his/my job to ask for radiology reports, call and ask for a script, call and schedule scans, call the drs office if the script for the scan isn't correct, etc.
The only way my son will manage with a disease like VHL is if HE manages the disease, reads about it, knows what to do when, and speaks up for himself with regards to doctors decisions.
(And this is with private insurance in a country with great health institutions.)
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