26/02/23 In

We're here, most although definitely not all of the boxes have been unpacked, and we have good fast broadband working. No landline phones yet, long story, but confirmed that we will keep the old number. 

As for the NHS, Good phone conversation with the new haematologist and she's ordering an MRI to investigate the static problem in my left thigh. 

That's all for now. 

21/02/23 Packing, and NHS

It's the day before the big day, and we have two removal men in doing the packing we haven't done ourselves over the last few days. Two more men due to arrive later, and they'll do a first van load as well. Second and final load tomorrow. 

Had a first phone call with my new NHS haematologist this morning, all good. Last weeks bloods all OK but paraprotein numbers not in yet. Good news is that she's ordering an MRI of my troublesome left thigh, although it hasn't been causing anything like a much trouble recently. 

The Telegraph reports that its the worst time to buy a house for 150 years, so presumably the worst time to sell as well. Certainly buyers aren't exactly flocking to view this place. The part exchange deal we did with McCarthy Stone looks better and better with each passing week - in effect they paid us to move in early. 

19/02/23 Closer...

It's getting closer to removal day on Wednesday 22nd (although we retain access here until the 28th). Decluttering is nearly done, although I still have a lot to do taking the computers etc. apart. Yesterday was fish re-homing day - they've all gone to our neighbour's rather larger pond. Later today we dismantle the stairlift with the help of another neighbour - it will go to auction. The skip - now fully loaded with bags of clutter - goes on Monday. Tuesday brings removal men to do their part of the packing, and a 'phone appointment with my new NHS haematologist. And we are both exhausted...

15/02/23 Blood

Gave my first blood sample for the NHS yesterday, so that's another step back to what's "normality" for me. Have to say the phlebotomist did the most painless job with the needle I've ever had. Quite literally did not feel a thing. The Chelmsford Health Hub where I had it done is only five minutes walk from the new apartment, and we were there anyway for delivery of some furniture. Of course some of it didn't arrive for "logistical reasons" but they're supposed to be trying again today and again we'll be there for the handyman who's installing some shelves, putting up curtain rods, and so on. There was a time I'd have done those jobs myself...

That's the balcony door on the left.

12/02/23 The last of our cats

A very emotional day, as we said goodbye to our cat-owning days. We could have taken only one of them to the new place, and neither of them would have coped well with having to become indoor cats. Blue - the more obviously troubled un-rehomeable one with her bad leg, irritable bowels, and deep mistrust of people (except us, after many years) - went to a wonderful cat sanctuary in Surrey a few days ago. This morning we took Belle to a foster home near Bishop's Stortford, and either she'll be rehomed from there or the people there will keep her. Both of them are ten years old (at least), and Belle also has a bit of a history with cystitis so although she's very appealing she won't be easy to re-home. And then there's the saga of transferring their insurance policies. Just another nightmare tale that's taken up time we should have devoted to de-cluttering and move-planning...

11/02/23 Appointment

Success! I have a 'phone consultation booked with Dr.Elshazly at Broomfield Hospital (NHS) on Feb.21st - so I'm back in the system and just about within the time-frame that I had originally hoped for, i.e. two months after ending my insurance at the very end of December.

10/02/23 Success?

I've now got a copy of the email that the Broomfield Hospital haematology secretaries sent to my GP secretary. The most important passages are these:

"We have accepted the referraL as a 2ww as he is an existing case" and "The consultant has just triaged this referral as a 2ww, please can you send over all previous correspondence ie from his private care under Dr Chowdhury etc so that we can scan these onto his profile on Lorenzo."

2ww is the urgent "Two week waiting" time, although I hear that in practice these days it's more like six to eight weeks - but much better than fourteen to sixteen months!

But still no appointment letter or message. I won't really believe it until I've got that.

06/02/23 Another NHS update

Good news, probably. My GP's secretary 'phoned to tell me she'd had an email from the Broomfield Haematology secretaries saying that my re-referral had been found, triaged (re-triaged?), and that I will get an appointment in two to three weeks. Whoopee and etc..

You'd think one or other end of that could have sent me a copy, but nothing has arrived. So I phoned the Haematology secretaries, but they're not answering the phone again.

Holding the full celebrations back until I've seen it all in black & white.

04/02/23 NHS update

(Also copied from a Myeloma Support UK post)

Another update, from the Broomfield Haematology secretaries. My "re-referral" was received but it never went into the review/triage process. So while I thought that was happening over the last couple of months, it wasn't. Nobody knows where the re-referral is. It was either lost or it's in one of two places but we don't know which or the dog ate it or it's down the back of the sofa or accidentally misdirected to the Bermuda triangle or abducted by aliens, they just don't know... So they've got the GP surgery to email everything to them again and we start the process from Square One all over again. With luck.

A classic piece of NHS administrative incompetence, it seems. I continue to wait for however long this stage is going to take and I don't see how anybody I could complain to would make it go any faster. I've kicked up enough of a storm already. 

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.