Slow to get a rheumy appointment

[Broseley]

My husband started feeling unwell in January this year. He ended up having a month off work. He is 53. Meanwhile the GP did various tests and a chest X Ray, he was even sent to A&E due to the pains in his chest. All checks ok. By July I suggested asking the GP for a lupus blood test, as I researched it and he ticks nearly all the symptom boxes, plus his mum has it. The test came back positive for anti nuclear antibodies and a few others. GP referred him to rheumatology, saying he can't treat him, he has to see a rheumy first for an assessment. Nothing had happened. I called the hospital and was told he will have to wait over a year. Meanwhile he is really suffering with aches and pains, chest pain, digestive problems, breathlessness and extreme fatigue. He is struggling to keep going but can't take any more sick leave. GP said he would chase, but that was a month ago.

Any suggestions please? We're in the UK.

[PMRpro]

Did the GP make it an emergency referral? Routine will be a long time thanks to Covid, but the terms the GP use always did make a difference to the urgency perceived. And urgent just means faster than routine, so where routine is a year, urgent might be 9 months and still be regarded as acceptable.

[Broseley in reply to PMRpro]

No, it was not an urgent referral. He seems reluctant to do this, possibly because unlike my GCA it's not life threatening? Or maybe it's because, being a man, he keeps going and leaves it up to the GP. I'm the one that does the chasing!

[PMRpro in reply to Broseley]

Then that is why it is so long - and I know your problems with a man who is ill!!!! Suppose it depends how you look at it - anything left can become life-threatening and even if not that bad, it can do serious damage to your body by the time they do anything.

[Broseley]

It's just so frustrating because once he's formally diagnosed, the GP can treat him, I think?

[Bowenlady in reply to Broseley]

I know you probably won’t like me suggesting this but I am a member of a benevolent society called Benenden. It costs about £12 per person per month. You get 24/7 GP over the phone cover immediately and after you make 6 payments you are entitled to the other benefits, they are not private health care BUT, if you need to go for tests and the NHS doctor says it’s going to take over (I think) 6 weeks then they will send you for those tests privately. They give you a temporary BUPA number. There is no medical and existing conditions are covered so long as it’s tests or consultation you need. Then, if you need an operation or specialist procedure, and it’s on their huge list of conditions covered, they pay for you to have the operation in a private hospital. There is no money to pay up front for the tests etc, you just pick a consultant from their list. My husband had a prostate problem that ruined his life for over 10 years, refusing to see the GP. Eventually I persuaded him to go with me. The waiting list to see the consultant was 18 months. Through Benenden we saw the same consultant two weeks later. Another two weeks later he had a prostate operation in a private hospital and he was in a really bad state. For what he had done the cost would have been about £6,000 we were told. We did not pay a penny. I had a really bad gallbladder problem two years before. 18 month waiting list for the operation. Spoke to consultant on the Friday who told me the waiting time, but if I was with Benenden he could see me the following Monday and I had the operation two weeks later as I was in a bad state. I know it’s bad that you get through the NHS waiting longer but when it’s your health and you are paying it’s a real help. Look up Benenden Healthcare. I have to say I am in no way connected to the company, I am just amazed at the valuable service they provide. You will need to read what things they cover, but they are amazing. I started off my eventual connection with my rheumatologist through them. The NHS treatment afterwards let me down but at least Benenden got me the referral to him. It’s just a thought. Men are terrible at getting things sorted. Hope this helps anyone.

[Broseley in reply to Bowenlady]

Thank you, I'll look into that. It sounds really good.

[CecilyParsley]

Hi Broseley, when I needed a referral to Rheumatology my GP asked if I could afford a private consultation as the waiting list was 8 months. I paid £225 and saw a Rheumatologist two days later. I then made it clear that I could not afford to continue as a private patient so I saw him the very next week in an NHS clinic. In principle I hate the thought of those who can pay taking priority but you and your husband sound desperate and it may well be money well spent. Good luck xx

[Broseley in reply to CecilyParsley]

Thank you.

[Hidden]

Put in writing to GP with copy to health board. Stay professional.

[Hidden in reply to Hidden]

Also if budget allows as for a quote from private sector for a consultation with a rheumatologist.

[Broseley in reply to Hidden]

Thanks we are trying this, but possibly just as long to wait. We have to convince GP to do an urgent referral.

[shellydreamer]

I’m in exactly the same position. My doctor referred me on 4 August, on 4 October I got a letter saying they had received the referral and there was a 35 week wait for an appointment. In the meantime there’s no help and my orthopaedic surgeon has said he can’t treat me any more until I have a diagnosis because it will affect what he can do for me. I hope your husband keeps positive x

[Broseley in reply to shellydreamer]

Thank you. He hasn't even had a letter! I had to ring the hospital to find out about the wait. He takes drugs for his red nose and for his Reynauds. Other than that, nothing. He does get fed up with feeling so exhausted and breathless all the time. I hope your appointment comes through soon.