Can I be referred out of area?

[Diver249]

I’ve posted recently about my travails with my local rheumatology service and have now got to the point where I’ve lost confidence in my consultant because of his refusal to listen to me. I’m aware that I have the right to ask for a second opinion on the NHS from anyone in the country ( I’m in England so not sure if this is the case for cross border referrals to Scotland) but unsure if my GP could refer me out of my ICB area to another service ie to change the service that provides ongoing care. Does anyone know the position on this?

[PMRpro Ambassador]

You are unlikely to be referred out of country - the systems are different and in Scotland I don't think you can even be referred out of area. Though I see you can - subject to approval by your local commisioning board. Practically, that means probably not!!

In England it is an option in theory but in practice I think the hospital can reject a referral if they consider they are oversubscribed already.

healthwatch.co.uk/advice-an...

[suzy1959]

I was very lucky to get my NHS referral yo Professor Hughes when he is very definitely out of my area. This was about 8 years ago and the rules have probably changed since.

I had already tried 2 local rheumatologists who were absolutely useless and another out of area who wasn’t very inspiring for me.

Do try to get what you need. I have been fighting my corner for nearly 13 years!!

[Obscureclouds]

interesting as my rheumatology consultant didn’t listen to me at the outset, unlike my previous excellent respiratory one, he refused to consider any link to an earlier autoimmune illness. He was very irritable and off hand when I questioned something he said and also his view that I should move on MTX once he could confirm history of melanoma wouldn’t rule this out. I’ve had little feedback when seeking advice on his plan for tapering Pred (which I felt became too rapid compared to previous experience) and It took 5 months for follow up consultation. I’m advised he is one of the best consultants for LVV here in Bristol but he still appears to have a set view on my moving on to MTX and won’t answer my question of suitability given that aches and pains weren’t part of my symptoms or listen to my concerns about side effects. I’ve wondered about whether I can ask to be transferred to another consultant but fear being labelled a trouble maker or being left with even less rheumatology support. For any steroid or LVV related concerns I’ve raised with my GP I am told to discuss these with my consultant despite me saying he doesn’t respond. I am now awaiting his reaction to my decision to stick to just Pred at this stage so would also be interested in knowing whether others have successfully been transferred to a different consultant within the NHS.

[PMRpro Ambassador in reply to Obscureclouds]

You could try PALS expressing your concern he isn't listening to you/poor doctor-patient relationship. If he is good he shouldn't feel threatened by a patient but with your history he should appreciate you need reassurance that you are included in decision-making. To be fair there is a lot of use of MTX in LVV.

[Obscureclouds in reply to PMRpro]

Thanks again . I’ll see how it goes. I haven’t completely ruled out MTX it’s just that the references to its use all seem to refer to helping reduce aching, pain and inflammation in joints (not applicable in my case) and give fatigue as a side effect which was my overwhelming symptom for diagnosis

[PMRpro Ambassador in reply to Obscureclouds]

That is because most of what you see will refer to its use in inflammatory arthritis, It is also used in vasculitis to suppress autoimmune activity and to potentiate the effect of pred so you manage on a lower dose.

Some people don't experience the fatigue - I did, after about 4 weeks I couldn't put one foot in front of the other for 6 days - I only felt human in the 12 hours before the next dose was due! But you have to try it to see if it works for you without bad effects. And it may be you have to "fail" it in order to get to try other things.

[Diver249 in reply to PMRpro]

PALS has changed from helping patients to navigate the health system and supporting them to raise concerns, which was its roriginal intention when first set up quite a long time ago, and now is used to ‘defend’ and deflect concerns against the NHS.the That’s been my experience, though of course in my area, so might be different elsewhere . PALS too is really part of informal problem solving and they can’t force NHS staff to properly engage with those concerns Beyond PALS there is a formal complaints system with dedicated staff , and it may be worthwhile having an informal discussion with them in the first instance. I’ve done that myself and feel reasonably reassured that they do have an interest in dealing properly with complaints, and of course, once a complaint is formal staff, whether they like it or not, do have to engage and answer. Of course course we are all fearful that taking that step will negatively affect our ongoing care, and that can only be answered by asking ourselves could things be any worse, than at present, given that it would be a very foolish thing for any staff member to take retaliatory action, as against the possibility that things could actually be made better through the response to the complaint.

[pmrdec112014]

I too asked my GP to refer to Dr Hughes who is " out of area".He wasn't sure if it would happen and mentioned funding but happily agreed to try and I was successful.

I am fortunate that I have always managed to have a good rapport with my gp and all my various con sultants that I have to see.

Not that, that should be the deciding factor though regarding care or treatment.

[Sophiestree]

Do you know who you want to see. I tried to make a private appt with a consultant recommended by someone on this site in the hope they would take me on the NHS after. He happened to ring me on the day I messaged his secretary to say she was away and he was about to go away. We talked about my LVV history and he said to get my GP to refer which I did. It took a while but they were fine with writing the letter.

[Diver249 in reply to Sophiestree]

I have identified a consultant in my next door ICB area who is recommended by Vasculitis UK and who they work with / have worked with. . The hospital is around 50 miles away so about an hour and a half by car or train. She doesn’t do private work - at least I cannot find her via extensive internet searches of the private hospitals and clinics - though her NHS bio is easy to find. Health Watch UK says that patients have the right to choose to be referred anywhere they want at first referral, and the government websites confirm that, and imply that patients can’t be refused their choice. It looks like individual trusts are ignoring the last bit and GP s are not making that known to patients. However there is no information on what options there are if dissatisfied other than using complaints - informally or formally. I will ring the Health Watch helpline tomorrow to see if I can clarify this further. I would rather not complain, though I shall if I have to, not least because I know, having worked for all my career across health and social care services, the glacial speed with which complaints are often dealt with and the avoidance of confronting issues which involve clinicians practice. As an aside, I have picked up local chatter from health staff that suggests that the problem I have is not uncommon and that some patients have resorted to simply turning up to clinics unannounced and uninvited in their frustration.

[Sophiestree in reply to Diver249]

Wow, re the last bit about other people. Yes, my new one is out of my area and a good hour to drive to but am happy to do that. And as I was still in the same region he was happy to take me. What I do though, if I have a phone appt rather than face to face, is to get my GPs to organise blood tests about 10 days before the appt so that I can give him the results. Seems to have worked so far.

[Bramble2000]

Hi, I’m in the same position. I asked to be referred out of area via the “right to choose “ path. It was rejected for being out of area. I guess you could ask for a second opinion but in the past I’ve found that problematic. Usually they’ll give an opinion and bounce to right back you where you were. If you’re in an NHS trust with two or more hospitals you could ask to be moved to the other hospital. Alternatively, I found a private rheumatologist in London who has brilliant reviews. I think he charges £300 for the first appointment. When I spoke with his secretary, she said he would do all he could to get me onto his NHS list but that might be an 18 month wait after the initial private consultation. My rheumatologist left me bedbound for 18 months because he said I was too young to have PMR. I proved it was PMR after that via a PET/CT scan. He now can’t understand why I have to attend my appointments in an electric scooter. I’m so weary of it.

[Diver249 in reply to Bramble2000]

I’m very sorry to hear of your experience. It’s bad enough being ill without also having to battle for what you need. You’ve probably got quite enough on your plate but I would think from your account that you may well have a strong basis for a successful complaint. What makes complaining difficult is that the NHS is allowed to ‘mark its own homework’. It would be better if the complaints system was independent and the investigations removed from the NHS., at least for those deemed more than simple administrative matters.

[Nagswoman]

I did. Can't remember the process but I think that PALS were involved as well as the GP.

[Mumdadlove]

I had been seeing Proff Hughes privately for the past 18 months, my NHS medical records did not have any of the private notes although my GP had been sent them, an NHS neurologist suggested that it would be better if I could see a rhuemotologist on the NHS, a long wait in my area, I mention this to Proff Hughes he was happy to see me and I had my first appt on the NHS within 4 weeks, he is out of area about an hours drive away, so it can be done

[PMRpro Ambassador in reply to Mumdadlove]

I think it probably helps when you have been seeing someone and they know you would like to get onto their NHS list. They know what's going on - and that you are likely to be a fairly moderate workload!