Hello and thanks for letting me join the group. I don’t post very often but maybe that will change!
I am interested in knowing how other UK people work with the NHS system.
I visit a large orthopaedic unit with several consultants (have seen 3 different consultants in the last 6 years - not my choice) and a handful of specialist nurses (although some are biologics specialists). I usually (but not always) see the same nurse. Appointments can be as much as 11 months apart even for nurses, 3 years for consultants. The nurses will make prescribing decisions such as starting a new DMARD (in my case Leflunomide) but not biologics. GP involvement is minimal.
I don’t mean to turn this into a rant as I am not ‘unhappy’ as such with the organisation other than the fact that the process seems very SLOW (whilst the disease marches on regardless) but I’d be keen to know how others manage the beast. For example, are you happy with nurses making prescribing decisions? Have you asked for more frequent appointments (through a helpline perhaps) or have you requested a particular consultant?
I am going to post a separate topic on the main board about ‘getting the most out of your consultant/nurse visit’ as this is not UK specific. I feel I definitely need help there!
Hi Sybil thanks for your reply. I did think things were a bit slow but it’s interesting to compare. 3 months between visits would be great… This was the first time I’ve seen a consultant for 3 years. As it was my fist session with him I will give him a chance - he’s booked a follow up in 6 months, though when the appointment comes through, if past experience is anything to go by it could be much longer.
I have read your recent posts with interest as I know Hereford and the hospital well (my mum lived there). I might even be moving back in that direction soon.
It would be great to hear from anyone who goes to the clinics in Bath …
Your story and comments resonate with me as I've had similar experiences, frustrations and thoughts about the NHS 'system'.
I seem to be one of the people for whom the treatments either don't work at all (methotrexate/steroids/Humira), work for a short while (leflunomide) or never seem to really 'bang for the bucks' (Simponi). And boy did I have to fight for a second biologic!
My advice to you would be to remember you are legally entitled to treatment in accordance with NICE guidelines (rubbish as they may be). So if you have failed two DMARDS and have the required swollen/tender joint count you are entitled to treatment with a biologic and, if necessary, ask for it. This is the cash strapped NHS (and some Trusts are in worse dire straits than others) so they may dither over offering the most expensive treatment.
At every appointment I used to ask the doctor or nurse 'if this doesn't work what will be next?' Knowing there was a next step helped keep me sane through all the endless waiting, treatment failures and pain.
When I didn't have an appointment to see my consultant but wanted to see him I put my hand in my pocket and paid for a private appointment. And I'd do this again if I need to move things along quicker. I'm seeing him in January (on the NHS) for the first time in some 15 months. This interval has been ok this time round as its been my Simponi journey.
And in the back of my mind there is always the second opinion or change of consultant/hospital option as there are centres, particularly Bath and Leeds, where there is some real expertise in PsA. I see you are in Oxford so Bath is pretty convenient and I hear very good things about Dr Korendowych (who also has a private clinic at the BMI in Bath ...... if you give her secretary a call she can give you some info on appointment availability and cost which is very reasonable compared with what I pay to see my consultant privately). Keep your GP on side as he/she would be the one to do you the referral.
Sorry this is a bit of a 'bang out the response' to your post but I wanted to answer while it was on my mind.
Huge thanks to Seenie, Sybil and Jules for responding. This forum is so valuable. I have far greater clarity now about my own personal strategy. As it was my first visit with the (3rd) new rheumy I feel I should give him, and the Leflunomide a chance. If my appointment comes through and it’s way more than 6 months I will politely request an earlier one. And I’ve already started a weekly diary of what I can and cannot do as far as mobility and day to day living is concerned. That’s all part of creating my ‘campaign’ for biologics. I’m sure there are people out there who are worse than me and could be seen as ‘more’ entitled, but that’s why the guidelines are there, and it’s down to me to prove I meet them.
I was having a discussion with a neighbour about private appointments with consultants and how this route is not always as expensive as you think. Again, not everyone is in a position to afford it, but it is something I would consider in the future.
I’m not going to let this rumble on at ‘tortoise’ speed as I’ve done for the last 6 years. I know some of the delays have been self inflicted as I’ve been in denial about needing to take ‘serious’ medication at times, but a little bit more engagement with the professionals would probably have helped. Live and learn…
Hi Helen, that sounds a great strategy and it sounds as if you now feel more empowered having got this plan together.
Just another thought, and I apologise for duplication if anyone else has already suggested this to you, but there is an excellent book recommended under the Book Review tab above - Psoriatic Arthritis: The Facts. I've found that the more knowledgeable I've become about PsA the better I can advocate for myself and it helps make discussions with the medics much more productive.Wishing you all the best with the leflunomide.
I’ll just duplicate Jules’ recommendation about getting the book! When you have a rare disease, becoming as expert as you can is one of the best things that you can do for yourself.
The Kindle (e-book) edition is your best value.If you don’t have a Kindle, you can still buy the Kindle edition, and download the free software so that you can read it on your PC.
Good question, I too wonder how the system works. I have not seen my rheumatologist ( as a NHS patient) since January and prior to that in December of 2013. I had seen him previously privately where he had started me on mtx and then SSZ. I saw the biologics nurse in June for my 3 month review and he said he would see in 6 months time, so I guess that will be sometime in Jan/Feb. My GP said he can write and request an appointment for my rheumatologist, but I get the impression it has to be for a good reason. So at the moment I'm just waiting to see what happens next, as I'm basically doing ok overall. On the other hand, the physio attached to rheumatology has been brilliant and has arranged all sorts of stuff such as hydrotherapy, ultrasound treatment for problem joints and just recently a strength building programme in the hospital gym.
