Advice on referral to Rheumatologist

Can I please ask your opinion on a referral to a Consultant Rheumatologist made by my GP?

Over a week ago I went to see my GP because I was really suffering with PMR and especially knee pain too. I also have joint pain in both thumbs and one finger. I explained that my husband had been so concerned about my welfare that he had called a private hospital locally to see if he could arrange a consultation for me to see a Rheumatologist. He was advised that either way I would have to see my GP for a referral. So I explained this to my GP who then asked would you like me to refer you, of which I replied yes please but I would prefer not to have to pay to go privately, and could he refer me via the NHS? So my appointment has come through today which is clearly a private appointment, and also not until 7th October. If I did pay to go privately I would have hoped to be seen sooner.

I do intend to call my Drs surgery tomorrow and ask If I could be referred to the NHS. Maybe it has been an oversight by my GP....

My question is, are you PMR/GCA sufferers being offered NHS appointments to see Rheumatologists or are we expected to go privately?

kind regards

Gill

45 Replies

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  • Where do you live.............

    You can be referred to a Consultant Rheumatologist but................since CCG's were brought in to the 'market' that can be problematic. The NHS referral will be to a hospital that the CCG has commissioned, that is why you no longer have the ability to say, I want to go to this hospital and that guy on the NHS unless that is one of the hospitals the local CCG has commissioned.

    In the old (well not so old) days, you were just referred by your GP to whomever he thought best........... (Privatisation by the back door, slowly slowly).

    You do not need a GPs referral to go private, you get the name of a good one and then ring his Secretary and make an appointment. I also think you would have got an earlier appointment........so perhaps it is a NHS appt.

    Tell us where you live and we might be able to steer you with a name and then you can ask your GP to refer you to him on the NHS as you think you have 'complex PMR' as normally,

    PMR is dealt with at Primary Care level but GCA is an immediate referral, as an emergency, to Secondary care level, which is Consultant level.

    That is why in certain hospital trusts Rheumatologists have set up a system where GPs can refer anyone who they think has arthritis or unexplained aches and pains and the arrangement is that you are then seen within 3 weeks. Mind those are few and far between.

    GCA is a different kettle of fish............emergency referral, or off to A&E as fast as possible and a few large hospitals have implemented a 'fast track' system.

    Hope I have written this clearly.........it is complicated nowadays and I am pushing on a bit.

  • Many thanks for your very informative reply!

    I am in the Poole & Bournemouth hospital areas in Dorset.

    My husband did originally call the private Harbour Hospital in Poole and ask if he could make an appointment and was told he would have to go via my GP for a referral.

    Anyway I am in the process of making contact with the Nuffield Health Bournemouth Hospital where my appointment has been sent from to see Dr Neil Hopkinson. I have had to leave a message and awaiting a call back to confirm this is definitely a private appointment. The letter does state that this is a private appointment. Also that if I require an injection, I will incur two separate charges, one from the consultant and one from the hospital. Also requesting medical insurance details and on arrival will be requested for debit card information. It does appear to make it quite clear this is a private appointment, and not NHS.

    kind regards

    Gill

  • Have you put his name in your search engine and looked at his specialism?

    Make sure that you get a letter from him with all the details then you can take it to your GP and perhaps come back into the NHS for future treatment and medication.

    I am trying to make contact with another person in your area and has a consultant who has looked after her with her PMR. If I make contact I will post it on here.

    Hope she is around.

  • It shows him as specialist in rehabilitation medicine & rheumatology.

    I have checked with his secretary and the appointment for Oct 7 th is a private appointment, which I have not as yet cancelled.

    I have made contact with my GP surgery and explained asking if I can be referred to the same consultant at Christchurch Hospital where he takes NHS patients. I will wait for the appointment to come through before cancelling the private one, just incase i have to wait months!

    Many thanks for trying to make contact with someone you know in my area with PMR, that would be good to know a consultant that comes recommended.

    kind regards

    Gill

  • "you no longer have the ability to say, I want to go to this hospital and that guy on the NHS unless that is one of the hospitals the local CCG has commissioned."

    Not according to the NHS website - you can choose the hospital and can name the team you want to see - though that may not always mean you see the person you want.

    nhs.uk/NHSEngland/AboutNHSs...

  • I think the NHS website needs a bit of updating! I notice they are not reviewing it until 2018 though. I suppose they are right in that you can ask for anyone you want and any hospital you want. I don't know what the chances are of that happening. In my experience pretty low.

  • I know several people who have done it successfully. By quoting that page to their GP - it says it is your legal right (in England, not Wales or Scotland). That seems to concentrate the mind...

  • My GP was quite happy to put my name forward to the person I wanted, but said there was no guarantee you could see them. Also if you do get the consultant you want for an operation it seems that the hospital put in a clause that although xxx is the surgeon you may get someone else in their team.

  • In England - not Scotland...

  • That's true. Mind you Wales is now a nightmare where my sister lives.

  • As far as I can see from the forums - all of NHS Wales is a nightmare... And they have their own rules too!

  • I am not sure they have any rules, totally feral!

  • HI Gill

    As far as I am aware if the doctor suspects PMR or GCA you will be referred to a NHS Consultant.

    However, if there is a particular one you wish to see then it may well be you would need to go private.

    I am in E Sussex and the wait is about 3-4 months in my experience. I was not happy with my consultant and wished to see another who was NHS, but I could not get on her list so I made a private appointment, she needed a letter form my GP but I was seen within a week.

    I hope this helps ~ good luck

    Lesley

  • Hi Lesley

    Yes I would have thought seeing a private consultant would have been fairly prompt appointment like yourself, but no it is Oct 7th!

    I have made contact with my GP Surgery and they are going to refer me to the same consultant at a different hospital fairly locally on the NHS, so hopefully it will all work out in the end. And hopefully I won't have to wait too long.

    3>4 months is quite a wait for you in East Sussex, hopefully Dorset won't be as long a wait.

    All the best to you and thank you for your reply

    kind regards

    Gill

  • We are at the end of August. This doctor may be one who doesn't have children and has booked his holiday for September to cover for staff members with children and/or he is attending a congress somewhere. If they work in the NHS their space for private appointments is limited and if he had already filled the ones just before and after his holiday - you still have to wait.

  • Not according to the NHS website - you can choose the hospital and can name the team you want to see - though that may not always mean you see the person you want.

    nhs.uk/NHSEngland/AboutNHSs...

  • Hi Gill,

    No you shouldn't be expected to pay, but from other posts on here the waiting lists to see Rheumies do seem to be getting longer and longer.

    Like you, I would expect to see a specialist sooner than October if I was paying. Why don't you try ringing the Rheumy's secretary checking availability, sometimes if you can attend at short notice due to a cancellation you can get an earlier appointment.

    If you are waiting that long for a private appointment dread to think how long an NHS one will be.

    Of course the delay may be because it's PMR and that's not considered as serious as GCA - I know it is to you, but not the medical profession.

  • Hi again and thank you for your reply.

    I have since contacted my GP surgery and they are referring me to see the same consultant at a different hospital with the NHS, so hopefully happy days! I just hope the wait isn't too long.

    All the best to you and thank you

    Gill

  • Hi Gill,

    Going off on a slight tangent, there is a local support group near you - it is the Christchurch group, but as most come from west Dorset we usually meet at Haskins Garden Centre, Longham (not far from Bournemouth airport. Next meeting is Thurs 21 Sept @ 10.30 onwards. It's not a formal meeting, more a cuppa and chat! Partners welcome.

    Lovely lady called Deirdre orgainises it - you can contact her on pmrgca.christchurch@gmail.com. She usually puts out a post nearer the day as a reminder.

    Hope to see you there.

  • Thanks so much for this information, I would really like to come along and it is not far from me at all. I will make contact with Deirdre.

    Many thanks!

  • Good please do. As I said it's not a formal meeting, but at least you can compare notes with others, and hopefully know that you are not alone in wilderness of PMR/GCA.

  • Hi Gillgetmeoffthemeds.

    Maybe it isn't a private appointment but an appointment at a private hospital where the nearest rheumatologist is based?

    I saw my rheumy under the NHS but at a private hospital.

    It might be easier to call the hospital and ask them then if they do say it's a private appointment then you can ask them to change it as they now have your referral.

    Good luck

    Blessings x

  • Thanks for your blessings xx. I have checked and the appointment was private at £225 for the initial appointment and a wait until 7th Oct. So I have make contact with my GP surgery and they are referring me to the same consultant as an NHS patient. So hopefully happy days, and I also hope not too long a wait.

    Many thank and kind regards

    Gill

  • Good job you checked. Good luck and I send all best wishes to you for a short PMR journey xx

  • Definitely on the NHS. Perhaps it's a clerical error. The wait is not unusual. You have a right, I believe, to be referred to a consultant and have some say in which one. Are you sure it's private?

  • I have checked and the referral is to see a consultant privately. I have made contact with my GP surgery who have agreed to refer me to the same consultant on the NHS. I only hope its not too long a wait. Although 7th Oct to see one privately I think is along wait.

    Many thanks & kind regards

    Gill

  • Gill

    My friend came through and this is what the person with GCA said

    "Dr Neil Hopkinson . He is a consultant at Bournemouth Hospital but all their Rheumatology is dealt with in Christchurch Hospital which is only about 5 miles away. He also sees private patients at the Nuffield Hospital"

    She liked him very much and was please that she had been referred to him.

    He does do NHS appointments, so insist your GP. I really think you should have another go.

  • Thank you for the above information, it is really good to know Mr Hopkinson has good feedback!

    I am just waiting to hear back that I have GP referral via the NHS, and believe it should be at Christchurch Hospital. It certainly sounds like I am on the right track now. Im just hoping the wait isn't too long.

    All the best

  • When I first had PMR my GP failed totally to diagnose it, even though I went back several times over at least three months. I was told I had a virus, along term virus! In exasperation I just phoned up a private rheumatologist with no reference to my GP. I got an appointment in two weeks and it took that long because the rheumie was on holiday. He diagnosed PMR in about thirty seconds. More recently my GP (a new one) said I should see a rheumie on the NHS. The wait time was around four months.

    You need to find out if you are seeing a rheumie privately or one on the NHS, although most of them do both, as the costs are not to be sneezed at if it is a private consultation. You may also have to pay for blood tests etc as well, I did.

  • Many thanks for your response. It does sound like you were initially let down by your previous GP. You must have been climbing the walls!

    The referral that has come through is a private one at £225 initial appt and any follow ups £150, like you say injections and blood tests extra.

    I have made contact with my GP surgery and they are going to refer me to the same consultant at a different hospital on the NHS. I only hope I don't have to wait too long.

    kind regards and all the best

    Gill

  • Hi Gill, I wasn't actually climbing the walls I could not even take a step upstairs!!! I think I paid £250 for the first appointment and then £150 after that. I also paid for the steroids initially too. The trouble was after the diagnosis which was brilliant, I felt I was becoming a cash cow as all he did was take my blood pressure and move my arms up and down. My new GP said that we could manage without a rheumatologist, so I moved to the NHS.

    Hope you get an appointment soon, it will be interesting to see how long it takes.

  • Although I see my rheumiprivately medication and blood tests are on the NH S via my doctor thank goodness Never paid £200 much less than that I must be lucky

  • In my area, pmr is usually dealt with by the gp surgery alone. I was only referred to a rheumatologist because 15mg pred only relieved about 50 percent of severe pain and the pain was also in my wrists hands and fingers.

    Liz.

  • Thanks for your message. I have made contact with my GP surgery who are going to refer me to the same consultant as i would have seen privately at a different hospital with the NHS. I am pleased with the outcome and hope I don't have months to wait! I too have extra complications not necessarily related to PMR with fingers and knee pain, hence my referral.

    I really hope seeing the consultant has brought your pain under control for you. All the best!

  • Hand (and foot) pain is not uncommon in PMR - the Leeds group looked at it and said so. I had knee pain - one rheumy told me my hand and knee pain was osteoarthritis, she "could feel it". Thirteen years later - no sign since it disappeared after about 6 months of pred at about 10- 15mg.

  • Thats very positive to hear! thank you

  • My PMR is dealt with by the surgery. I asked for a referral and the consultant cancelled the appointment saying the GP's can deal with it. In my area it cost too much so it's a last resort. You are fully entitled though under NHS and can insist.

  • Thanks for your reply. That doesn't sound like a good deal in your area. I hope things have worked out well for you and you are getting the treatment you need!

    I have spoken to my GP surgery and they are going to refer me to the same consultant as I was seeing privately, with the NHS. I just hope he doesn't cancel mine! or I have to wait months! I have kept my private appointment for the time being.

    kind regards

    Gill

  • Hi Gill.

    I was referred to a Rheumatologist quite quickly after my diagnosis by my GP and told that the wait time was around 3 months. I got the referral letter but chose my own consultant by looking up the best one in my area for pmr. I chose an initial private appointment and was seen within 2 weeks.

    My NHS appointment came through for 3 months later and my private consultant is happy for me to transfer to his NHS clinic at that stage. It was just reassuring to have my diagnosis confirmed and time to have my questions answered. If your appointment is private you should be able to ring the secretary direct to ask for an earlier appointment.

  • Thank you for your reply. Yes I can understand why you would want to see a consultant privately if you hadn't had a diagnosis. It sounds like it worked out well for you.

    I was surprised by the wait to see a consultant privately, Oct 7th!

    I have made contact with my GP surgery and they are going to refer me to the same Consultant at an NHS Hospital fairly locally. I will though hang on to my private appointment just incase there is a 3 month wait in Dorset. Fingers crossed and thanks for you input.

  • I have a private rheumatologist but had to go through my doctor. It was the best thing I did he looks after me and keeps my doctor updated. Don't have to see him that often but he always says I can phone him or e mail him anytime. Now I am moving to Newcastle he is writing to a rheumatologist whom he knows asking him to take care of me and giving my details etc. As I am hopefully slowly getting better I hope I don't need to see him but that is in the lap of the gods is it not.

  • Hi Gillget

    I was referred by my neurologist who I was seeing...you should be

  • I saw a rheumatologist at my local hospital just a couple of months ago. I said to my GP that as I was difficulty weaning myself off preds for my PMR I wanted to discuss the alternatives with a consultant. This was set up and I have a programme now from the consultant which is working. He has also given me an appointment which is valid for six months in case of any problems. The check was really thorough with the consultant and well worthwhile. I hope this helps?

  • Many thanks for that, it is good to know you got a good service. I am looking forward to seeing the consultant and having a thorough appointment. I seem as if I go to my GP and just pick the two most serious problems i'm having and never get to chat about the long list of others that are really impacting on my life.

    many thanks!

  • Hope you are successful in finding an NHS rheumatologist - there shouldn't be any reason for not being referred to one.

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