How long should he expect to wait

Hi folks we're from Kent, England. you may remember me from another post where I advised that I have ms and it's very likely that my husband has RA. He had his first appointment with a rheumatologist last week, all was going well (although the xrays and blood tests were not in the system) but fortunately, my husband had taken photos of his ankles when they were swollen. rheumatologist said, (after hubby had lots more xrays and blood testsI think I know what this is and we have to nip it in the bud.

He wrote urgent on a form and husband duly went to see a receptionist; where he was told that the first appointment available was in 3 months time. Husband remonstrated about this and was duly offered an appointment with a nurse in one month's time. Husband asked whether nurse would be able to offer a diagnosis or prescribe drugs.

Basically he came home furious and wanted to complain but by the next day he'd calmed down and didn't want to talk about it.

Can anyone tell me whether 3 months is a reasonable amount of time to wait for an urgent appointment and how much it would cost to pay for a private consultation to get a diagnosis. Thanks for any help you can give.

19 Replies

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  • Hi

    Just to try and put your minds at rest. I only saw my rheumatologist once and then have been seen by rheumatology nurses. They work closely with the consultant and usually run clinics alongside the consultant so they can pop in to see consultant if there are any queries.They can change doses of meds but not prescribe new ones. They will take advice on that from consultant. I have found them to be extremely knowledgeable and they are given more time per appointment so more time to ask questions.

    I hope this makes you both feel a little better. Obviously it's about cost and money, but not necessarily a bad thing.

  • Thanks Beaches2, it could work the same as with ms nurses, the consultant might diagnose and information would be sent to the GP and given to nurse. When he sees the nurse he or she may advise him of what the consultant would like to prescribe and what the diagnosis is.

  • Yes that's how it was for me. I think the information is given to the nurses by the consultant and they work with that. The nurse gave me the diagnosis at my appointment after they got blood test results. I also remember the nurse going in to see the consultant while I was there to discuss what drugs to add in when mtx wasn't doing enough for me.It's been better for me, I like having time and not feeling rushed. Hope it works out OK for your husband

  • Thanks for that, I hope so too.

  • Hi, I would say yes 3 months is about average . I live in Kent also.

    I can understand your husband feeling fobbled of, but there is no reason to be the nurses are specialists, it is exactly as Beaches says, they work closely with the consultant and can call on them if needed,while you are with them.And they certainly give more time.

    On average about £ 100 to £150 for a private consultation if you decide to go on that route, it would give your husbands care more consistency if you saw the same consultant privately as you are seeing through the NHS.

    Most of them do private work as well.

  • People regularly complain about waiting times and I and others have posted as to what to do.

    You are entitled to be referred to any hospital of your choice. There is a choose and book system on the NHS: your GP gives you a pin number and you go on the website and can see where the next available appt is. Alternatively, the GP can do it for you. People cancel appts all the time so it is ever changing. As Kent is close to London, you could try any of the London hospitals.

    I have had NHS several appts now and I always see the consultant who is very affable, quick and efficient. He sometimes looks at his calendar on the computer and gives me the appt there and then - twice he has given me another appt within 2 to 4 weeks.

    If yours is a first appt, the only entitlement on the NHS is to see a specialist (not nurse) and to commence treatment within 18 weeks. If you add your first appt waiting time to the three months, it sounds as if you are out of that timescale. The clinical commissioning group government that hospital then has to arrange for you to be seen privately. Unless you have a diagnosis, I don't see what a nurse can do. You would be better to see a physio than a nurse but even then you really need a diagnosis.

    Initially, I was kept waiting so I made an appt privately (after intense pushing by the GP to go private and lack of co-operation). In London, I paid £270 for a first appt and then £170 for a second. I was getting fed up because at the second at least I expected an ultrasound and x-rays to be done (I could have gone across the road and then come back) but the consultant wanted me to come back several weeks later because he would be abroad. I was paying for the tests. I then got an appt on the NHS who did the tests immediately - which seemed to upset the GP. The private consultant diagnosed gout but the NHS one inflammatory arthritis/RA.

    If you do see someone privately, it may be better to see someone who also holds an NHS appt - as other people on here have said they get the tests done on the NHS. I don't know how because when I made enquiries, if you saw a consultant in the private wing of an NHS hospital, you had to pay for the tests. You can try though but ask the receptionist or secretary before you go if you can have any tests done on the NHS as you are already an NHS patient.

    In my case, it really slowed things down. I could not write my name, get dressed, turn a key, pour a cup of tea, handle money for six months and nobody seemed to give a stuff - insinuating that it was a minor ailment.

    I don't know if it would hurry things along if you could either get the GP to organise x-rays and ultrasound scans plus blood tests, or else pay for them. These are only £99/ultrasound and a small amount for x-rays. You can get an MRI scan done for about £200. I would think that if you had the solid proof of the severity of the condition, they could find you an earlier appt but if not just take the earliest appt in London or surrounding areas. There must be somebody available.

  • When did you use choose & book? I've been told it is no longer used. Instead there is an e-referral service for some things.

  • I went to a GP last September regarding a referral for my feet. I wanted a referral outside my area and he did not want to do it. He went on to the system to see where he could get an early appt. It only takes a couple of minutes. Maybe the NHS needs to update its website.

  • Usually for your first appointment on referral from GP

  • The guidelines for early arthritis are 12 to 18 weeks. So it just about squeaks in depending on how they view the first appointment. Like others I have many of my appointments with the specialist nurse, not the consultant, and she's good, so I wouldn't feel fobbed off with an appointment with the nurse. However, it does depend on where you're at in the diagnosis pathway, and what the consultant has instructed.

    You could also give the patient liaison service (PALS) at your hospital a ring. Sometimes they can intervene positively without things turning in to a big drama. Depending on how many rheumatology services you have access to, you might be having a long term relationship with this one. So sometimes polite perserverence and assertiveness can work as effectively as major complaints.

    I know nothing about going private, but I do know that unless you have substantial resources you will probably have to work with the NHS (and definitely if you need some of the newer drugs) , so if you go down that route make sure you use a consultant who does both.

  • £190'ish at the Alexandra in Lordswood it that helps. Without tests and I'm North Kent I suppose you could try ringing the hospital but its probably not unusual as our local hospital is desperately short of staff.

  • We're quite near you medway-lady and I have wondered if Medway would have been quicker, he's under Ashford hospital at the moment, I assume that was because he got the fastest appointment there. he doesn't give that much away but thanks for the info.

  • A private script can be cheaper than an NHS one for MTX though. Yes you do have to pay for tests but to be honest it was worth it, for a quick diagnosis and treatment I mix private with NHS and as long as I can afford it and I have paid all my working life into the NHS I don't see a problem. I have had excellent treatment and can only speak very highly of the RA consultaI see at as the Alex, same guy as at the MMH anyway. Its nice to have time to ask questions be treated and well. It is different going private and it'd be worth ringing them to ask about costs of tests etc.

  • I do think it would be worth but husband's dead set against it, so what can you do?

  • Suffer is the short answer! seriously I'm not sure but do sympathise. xx

  • The problem with going private is the cost. You will be charged for all xrays, scans and bloods as well as for the appointment time. My Rheummy nurse changed my drugs, both the dosage as well as putting me on a new drug. The prescription even had her name on it.

    I hope that you get answers soon.

  • Thank you Jacqui

  • This is normal and although not acceptable it is the best they csn do. I have to say after a very shaky start i am overall happy with my care at rheumatology. I have seen a doctor 3 times in a year, 1st appt and 2 follow ups and have seen specialist nurses close on a dozen. The nurse i see now listens much more closely and responds well. All my treatment changes have been initiated by my nurse. I have gone from mtx tablets to mtx and hydroxychloroquine to mtx injections and hydroxy and leflunomide .. had steroid injectioms because of nurses and probably still cope because of them. Some specialist nurses prescribe and most know their stuff well. Its their chosen field after all, theyre not just passing through like registrars may be...and nurses main role is to advocate for patients. My nurse listens to me, checks my joints and results, goes out the room to discuss with doctor and comes back with plan. Give it a go. Better than 3 month wait. And thats the point of specialist nurses, to reduce waiting lists and support patients.

  • Thank you Mirren, I'll tell him that. Wendy x

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