01/02/23 NHS

 (Slightly edited from a post in the 5200+ member Facebook Myeloma Support UK group that I help to run):

I was diagnosed with myeloma in the autumn of 2019 by Dr.Ko at the NHS Broomfield Hospital in Chelmsford. He set out my original treatment plan, with the expectation of stem cell transplant after four to six cycles of first-line treatment. All by the book, although I didn’t know it then. He was keen on the value of Lenalidomide for post-SCT maintenance, but it was not available on the NHS at that time. For that reason, and because I had been paying for “Comprehensive Cancer Cover” with my AXA health insurance for years, I decided to go private with Dr.Ch (who also worked at Broomfield until a few months ago) at Springfield Hospital in Chelmsford. I have no complaints about AXA, despite a disagreement over whether Lenalidomide actually qualified as “chemotherapy” and whether they should pay for it. We won that argument! However the premiums went up and up, and came very close to unaffordable at the March 2022 renewal. With the 2023 renewal coming over the horizon I took a long hard look at things and decided that it couldn’t go on any longer. So I planned to say goodbye to private health at the start of this year and to return to the NHS and, ideally, to Dr.Ko.

At the end of November I contacted Broomfield Haematology to ask what would be involved in returning to them. They asked for a new referral from my GP and to his credit he did that very quickly. They said it would have to be reviewed along with all the other incoming referrals and that it would probably be two or three months to get an appointment. I waited, no appointment letter arrived, I ‘phoned again. Then a letter turned up saying that if I hadn’t had an appointment letter by February 1^st I should ‘phone the Referral Assessment Service, which I tried to do this morning. The first person I spoke to said she couldn’t help but she’d pass me on to somebody else and, well, you can imagine the next few stages. Eventually I got to an automated system which asked me to leave a message with my name, contact numbers, date of birth, NHS number, and so on. I got as far as “My name is Ian Cr” and it cut off. And again. There was an option to ‘add to message’. Same result. And one to ‘re-record’. And again…

Decided on a change of plan and try the Haematology secretaries again. No answer, several times. Eventually managed to leave a full message.

We went out to do some curtain etc. shopping for our house move and went for a light lunch in Marks & Spencer’s Food Hall café in the Clock Tower (for those who know Chelmsford). During lunch one of the secretaries called my mobile but there was so much background noise that she couldn’t hear me. I said I’d call back in half an hour when we got home. I’m sure she said “OK, speak later”.

We got home. Phone not answered. Again and again and again.

Back to the Referral Assessment Service, and against all hope a human answered.

“How long till I get an appointment?”

“Fourteen to sixteen months, sir.”

Speechless…

Yes, I did hear right. Yes, she did mean it. I went through it all again. I’m not a new patient, Dr. Ko at Broomfield diagnosed my blood cancer, there’s no question that I’ve got it. All I want to do is pick up where I left off. I’ve spent three years saving the NHS all the costs of my treatment…

“Only thing you can do,” she said, “is to get your GP to put you on a two week cancer referral.”

So I ‘phoned the GP surgery’s secretaries, told the whole story all over again. Short answer is I’m not eligible for the two-week fast-track because I’m not a new case. But she spoke to my GP and he wants a ‘phone call to talk to me about it and see if we can find a way to “expedite” things. Well, that’s something and the best news all day. But the first available slot for a telephone consultation is   -   wait for it   -   March 13^th. Almost six weeks away. And that’s before we start any ‘expediting’, if it’s even possible.

I told the story to my retired rheumatology consultant friend this afternoon during our regular online backgammon session. His reply: “Broken NHS.” You can say that again. We read all the stories, but this personal experience brings it right home.

I have to take things into my own hands. Fortunately I’ve been in stable remission for a long time, am off all treatment, and I’m sure I don’t really need the regular four-weekly blood tests. One every three or four months should be enough. I’ve found one place offering private myeloma screening for not too bad a price (approx.. £180) but it would mean going to London just for them to take some blood. I’ll ‘phone them in the morning to see what they would charge for just paraproteins and free light chains, I can do without the rest. Several other “private blood test” places to call as well, although judging by the websites I doubt they’ll have a clue about myeloma and PPs. If I have to do that say four times while waiting the long wait for the NHS, it’ll still probably be less than a month of health insurance would have cost me…

So, the moral of this tale: Yes, I’m afraid the NHS is broken. I dread to think of the position I’d be in if I still needed expensive drugs every month, or will be if I relapse at some point over the next year or so.

I did the right thing, I checked it all out before I took the great leap and was assured it would be ok – maybe one month missed, no more than two. But it’s fourteen to sixteen months. Do I feel betrayed by the NHS, born in the year of my birth and now in an even worse state than I am? You bet I am. Be warned, you can’t rely on it to be there for you any more.