Does anyone have problems with obtaining ref... - Vasculitis UK
Does anyone have problems with obtaining referrals from your GP to a vasculitis consultant/hospital of your choice..or have you in the past?
yes. He's good at so much, but won't. I wanted to see Dr Jayne - computer says no!
sandra.
Yes, I was told by my GP that Addenbrookes was outside my health authority area and that, unless it could be shown that there was no suitable consultant within my area, a request for funding for referral would be refused.
However, was also told, off the record, that if I made a big fuss, then there was a chance the request would be granted.
Ayla
Yes, I was told that I could not see Professor Luqmani at Oxford as it was outside my health authority. I now travel to London to the private London Bridge Clinic but this cannot be covered by health insurance as Vasculitis is a chronic condition.
No I asked to see dr Bruce at Manchester for a second specialist opinion and my gp wrote to him and I now see him every six months. I've asked for my routine care to stay under the rheumatology consultant at Airedale hospital. Dr Bruce had access to information from my gp about my condition and care. He wrote to my usual consultant with a summary of our discussion after he saw me. It may have helped that my gp by chance trained under dr Bruce. But under the choice initiative in the health service It should mean that you can see which consultant you like for advice.
Yes, I did have considerable difficulty with my GP and, after years of private researches, it still took many months to get the referral (and consequent diagnosis). I was initially sent to St. Thomas's from Suffolk but I asked to be transferred to Dr. Jayne at Addenbrookes which has been brilliant. I too am actually outside the area but I do not think there are any specialists in my area and I am very pleased to be with Dr. Jayne and his team. Persist sandra99b.
No I asked my GP to refer me to Addenbrookes after my local hospital said they had no more answers for me. I had my first appointments this week and I am so pleased that she did, despite the 120 mile round trip.
Yes and I am still having problems with this now. I've been given loads of excuses as to why I can't get referred to Addenbrookes including that they didn't want to tread on my current consultant's toes and even though he has ignored my pleas via email to see him sooner than March next year, I'm still stuck with him. It's got to a point now that my folks are trying to give me money to go private because at least I'll see someone!
This is worth a read : It suggests YOU can choose where you go .... even if 'out of area'.
This situation will become more and more of a problem once the GPs fully control their funding. They may have special 'deals' in the local are which reduce their costs.
As Doctor's surgeries are run as private businesses they will be looking at the bottom line in deciding your care - what choice is best for your health AND their profitability. Not much you can do really other than being assertive (probably when you least feel like it!)
Good luck!
Note : June 2015 is the next expected General Election.
Yes I have requested a referral to see my specialist on several occasions but have been refused due to costs . I have since been rushed to hospital 3times in the last month on all occasions I have requested but to no avail . I did write to my local doctor and was told it would be unlikely unless I went private. I have not seen my Vasculitis specialist in over 18 months
I would suggest you write to your MP and ask him to take it up with the Minister (Jeremy Hunt). Copy the letter to your GP. It's very sad that you have to kick up a fuss to get your rights these days!
The NHS choice regulations (which you can look up on the internet) state that patients are entitled to be referred to a centre/hospital of thier choice to see a doctor of their choice. This is nothing to do with the consultant you may have been seeing. You ask for any referral through your GP. If your GP refuses to do this you should ask for a letter stating why your request has not been granted. In the case of some centres such as Birmingham, Cambridge and Hammersmith they are centres for tertiary referrals and will except patients from anywhere in the country. If your GP refuses to do a referral without reasonable grounds then he/she is in breach of NHS regulations. If you have been having problems with your GP or your present consultant you should ask for a copy of the referral letter a) so you have a record of when the referral was actually written and sent b) So you can be sure that no prejudicial comments about you have been made........ It is very unfortunate that some patients have to go these lengths as specially when they are feeling so ill but the majority of GP's and consultants are supportive and only want the best for their patients.
Having said this we have been contacted quite a few times in the last couple of weeks from patients with vasculitis struggling to get referrals from their GPs to see doctors/consultants of their choice who have a special interest in Vasculitis.....
No. My GP stalled initially and thought I should give the local rheumatologist more time. But medical friends insisted that I should ask for a second opinion, and so my GP practice referred me to the Hammersmith Hospital, even though it is out of our area. They were great and saw me very quickly and for the first time I felt someone understood and was giving me some sound advice. They were happy to see me once or twice a year, and to work in partnership with my rheumatologist. But.... Next time I saw him he told me that he didn't agree with their diagnosis, or treatment, or their request for an MRA scan. By this time my GP was also concerned about the deterioration in my kidney markers, and unhappy about the response he got when he rang the local clinic. So we all agreed that the next step was Addenbrookes as it is allowed for our area; the decision to refer me was made by a local committee, but as far as I know they were quite helpful. Anyway, I didn't have to wait long.
Clarifying....it was the local rheumatologist who disagreed with the diagnosis from the Hammersmith hospital, and saw no need for sharing my care, scans etc. so that is why my GP agreed to refer me to Addenbrookes. Hammersmith were great all the way through, and made a big difference to me because they really listened, cared and talked to me as a sensible adult!
My husband went to Addenbrookes initally when we returned to the UK but we have now moved to Devon. We found a local GP who was interested in his WG, and he was then referred to a local Rheumy who holds a clinic at our local hospital. At the last appt she explained that she was not an expert, she sees about 1 patient a year and did we still want to go to Addenbrookes as well. As it's a long way for us now (an overnight trip) she agreed she was happy to liaise with Addenbrookes for any help she may need. Very enlightening to have such open minded professionals.
We (ie Vuk) are strongly in favour of "Shared Care" or the "hub & spoke" model for vasculitis care, whereby the diagnosis and treatment is either carried out in a centre where there is lots of expertise and experience in managing vasculitis cases OR locally but with regular supervision/advice from such a centre. This works for the benefit of:-
1) The patient. Top quality care without lots of travelling
2) The local consultant(s) who will both learn and gain experience.
3) The vasculitis centres, where they get overloaded and budgets get stretched. It reduces pressure on them.
4) When special vasculitis centres are involved, it gives them greater opportunities for clincal research into vasculitis. But when there is cooperation between the centres and local consultants, those patients being treated locally can still be involved in research studies.
In vasculitis research, getting enough patients is often a major problem.
If everyone had all their treatment at a few highly specialised vasculitis centres, then consultants at local level would become even less aware and knowledgeable about vasculitis and consequentially it would be less likely to be recognised early.
The revised Guidelines for treatment of ANCA associated vasculitis or AAV (not yet published) emphasise that where doctors do not have experience in treating AAV, they should always seek advice from someone who does.
John
After 5 years of frustrating care at different local hospitals/consultants i asked my GP to refer me to Dr Jayne.. My GP wasted no time in putting my referral across and i have been under Addenbrookes care for 13 months now. Even with a 240 mile round trip it is so refreshing to be treated with patience understanding and to feel confident in their medical decisions.Well done Dr Jayne and your excellent team !!
My daughter's GP said he couldn't step on her consultant's toes but would write to her. However, when she was hospitalised last week her consultant came to see her and we mentioned a referral to Dr Jayne. The only way I can describe her reaction is that she sneered "Dr Jayne, oh yes HE wrote the paper on Rituxamab". She went on to say that she had referred patients before but that she had received complaints from them because they don't get to see HIM ... they were seen by people lower in rank than her! She did say she would refer her to a colleague in Oxford who has 10 years more experience in this field, but that it would take a few months before this could happen. We will have to wait to see what happens.
