My husband started with pain and swelling in his hands, awful fatigue and nausea about 2 months ago. GP did bloods and x ray, said no rheumatoid factor or inflammatory markers but referred him to rheumatology as an urgent referral as it’s having such an impact on his life and work. (And mine as I’m having to do lots more and I have osteoporosis with at least 5 compression fractures.) He’s just rung the clinic and been told his referral has been downgraded from urgent to a nurse practitioner appointment with a waiting period of 30 weeks currently.
He’s really upset and down about it, feels he can’t live with the pain and fatigue that long with no resolution. GP prescribed Naproxen which gives him little relief.
Do we just give up and go private, the idea of which we both hate?
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Nuthatch
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Oh god, that’s really awful & not sure about other people on here, but I’d feel awkward about advising you on this. I feel like you do about going private & have fought NHS & other cuts in the last decade. I suppose if it’s having such a bad effect on your health (or your husband’s, but it affects you too) maybe you’ll have to grit your teeth & see if you can go private😢 My son had awful dental issues & that & mental health services have always been bad in the Norfolk/Suffolk area. He’s having to fork out £1 K for private treatment for it.
Also hearing of other people forced to go private for dental & other treatments, I suppose even I might have to if it got so bad. I waited months to get an X-ray, then ages to get the results, but was living with worse pain due to a fall on concrete in September 2020. Still waiting for an ambulance report for that, so the solicitor can press ahead with my compensation claim. The Council here have already admitted liability for a dodgy, broken path. Good luck 🤞
Put your feelings about a Private consultation behind you. What if you sit it out & you find in 30 weeks time your husband’s condition has deteriorated?
Make sure you choose a consultant with an NHS practice you can transfer to if needs be, & get on with getting some treatment.
I tend to agree, reluctantly. Some time ago I had a really unhelpful NHS consultant who decided that my RA was in remission. Disastrous consequences. I identified a consultant in the same department and my GP (reluctantly) referred me to his private practice. I approached him to ask if I could go on his NHS list. I expected a bill for the consultation, this was some 8 years ago and despite a couple of reminders, never received one. He has been amazing and very responsive. I'd advise an approach like this but to be clear exactly what you want.
Totally agree.
Sorry to hear about your husband’s situation.
You can get a private consultation then their view is passed onto your GP who then would have to proceed...
I went to a private ear, nose and throat consultant so not sure how much x-rays are etc if you're thinking of getting those.
Half hour with a top ear, nose and throat consultant was £210 and well worth it for my situation.
I think you and your partner have been placed in an intolerable position.
It is always an option to get a private consultation then use that to discuss again with GP/ rheumatology - to get seen quicker on NHS.
(Like a mix and match approach) Crazy that you have to consider that - but it allows your husband to be seen quickly and get that all-important first clinical opinion. 💐
Wow, thanks for all the replies everyone - that’s really useful and makes me feel better about him going private. I’ll start googling as he’s so crushed at the moment he’s being completely negative about everything!
You should write to your MP with a full record of what has happened to your Husband & ask for his/her help. You could also complain to the appropriate local or regional health Authority. If you persist you will see some action.
I was in a similar position this time last year. My suggestion is to book a private clinic with a consultant that also works with the NHS. Most do these days as unlike the old days it's allowed and they can make more money. Unfortunately, that's what most of them care about the most. You can check on the NHS website who their lead RA consultants are and on the private hospital sites. Have the appointment (which will normally cost about £200!) then tell him or her you want to been seen on the NHS going forward. That way he can start his medications and get the ball rolling whilst he waits for NHS to take him on. Staying private with RA without insurance can cost ALOT of money in the long run. He will need to pay for medical care/drugs until he get on the NHS, but will be limiting the join damage in the short term. He really should be seen by the NHS within 12 weeks, but things are so messed up at the moment going private first is the best option. I was seen privately within 3 days once I agreed to pay privately. I hope this helps you and your husband. Good luck 👍
I don't think the majority of us would go privately if we didn't need to but I certainly would in your situation. If any member of my family was suffering so much and had so long to wait I would pay whatever it cost. Don't give it another thought. There is only one option. Good luck x
As most have said go private initially if you can. I went private in January 2020, the gp didn't think I had RA but the physio did, initially told by private consultant he thought I had enthesitis in my elbow, shoulder & hamstring but in November 2020 diagnosed with psoriatic arthritis, unfortunately I didn't think at the time to check if the consultant worked for the NHS but he'd retired, I'm on shared care with my gp for my meds / blood tests.
The consultant wrote to my gp to ask for me to be put on the NHS list, this was requested in January 2021 but my gp didn't refer me until March when I chased it up, I spoke to NHS rheumatology last May & was told there's currently a 77 week wait!
The consultant believes I will need biologics but private insurance won't pay for this so I'm just having to wait, my gp has written 2 letters in the last 6 months to see if they can speed things up but still waiting.
I saw a private consultant in Jan 2020. He ordered blood tests and X-rays via my GP. The blood test results got lost, nobody looked at the X-rays, lockdown happened and nobody would talk to me, then in July 2020 I moved house and had to change GP, and my new GP refused to do anything until I’d seen an NHS consultant, which was a 51 week waiting list. All in all it was a waste of money - but hopefully that won’t be your experience! 😁 good luck!
When I first moved here and had a flare I was told three months wait at least for an urgent Rheumatology appointment - so despite my objections I went privately and still had to wait six weeks such is the shortage of rheumatologists in this area. And that was 'before Covid'. But it got things moving.
I do think that a letter to your MP is worth doing also. He may not be able to do anything to help in the short term, but unless we put pressure on our MPs, nothing will change.
I did go Private. waiting list was 36 months on NHS. Saw Rhuematologist 5 times, once we had all tests done and results in he transferred me to his NHS clinic. Worked out really well.
As others have said, I'd go private. 30 weeks of pain and possible joint deterioration is an awful thought. I'd want it sorted, especially as medication often takes 12 weeks to work.
I had to see my Rheumatologist privately…..hadnt seen him for 2 years and RA nurses are limited on how they can help. Best thing I did. Think Covid has got in the way of our ‘normal’ appointments.
Very sorry to hear of your troubles. I agree with all the posts encouraging you to go private in this situation, at least to begin with, as others suggest. Sorry I can't help any more, but wishing you all the best for things to improve for you both X
When I was diagnosed 28yrs ago I saw a consultant privately for assessment then after that saw him on NHS at the hospital. He was able to put me on pain meds straight away I’m glad I did this as 3mths later full blown RA kicked it and I was in hospital for 3wks while they sorted a drug plan out for me which started me on methotrexate. Personally I wouldn’t wait but only your husband can decide best action x
Again, thank you for all the positive and encouraging replies. Annoyingly there are only 2 private rheumatologists in the area and only one also does NHS but not in our hospitals trust. I’m not sure our MP could do much in the circumstances, she’s ok but I reckon she’s got enough on her plate as a Labour MP in an area which has been systematically levelled down for the last 11 years..
But I will try and persuade husband to take it up with GP first and at least have a private consultation if they can’t or won’t do anything. He’s a lot less pushy than I am though..
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I am so angry.
Advice please Rheumatology appointment to assess for biologics cancelled for tomorrow 🙁
First appointment
Don't know what to do.
Awaiting Consultant Appointment - Bricking it
