General diary entries

TIME TO VENT

OK, so I think I’ve mentioned the difficulties my husband has been having for the last few months, although I haven’t gone into any great detail.

Well, enough is enough.
Forgive my angry typing. This blog will be full of mistakes as I am actually quite fuming while I write this.

Ian suffers from psoriatic arthritis and has had neck issues before and even had to have some pretty major surgery on a couple of vertebrea in his neck a few years ago. He’s also had surgery on a shoulder in the past too.
His condition will not improve, in fact it will only get worse.
For the past few years he has suffered with numbness in his left leg which would come on without any warning, making days out a bit tricky because he just doesn’t know when it would happen. This is something he’s seen a Dr about and apparantly they couldn’t find any problem because every time he finally got to see a Dr, there was no flare up!
The fact that his leg becomes numb without warning is apparantly not an issue.

Way back at the beginning of october 2021, he started having difficulties with pain and numbness in his neck, arms and hands. He has been working from home since the start of the Pandemic and this had actually worked out well for him. It meant less time driving too and from work and he was able to spend more time actually working. He was more relaxed.
This all changed in October when he got to a point where he literally coudn’t sit at his desk and do any typing because he was in so much pain in his shoulder and the tips of his fingers became too painful and sensitive.

He was signed off work and is still signed off!
However, when his current Dr’s note runs out, his sick pay from work may also run out.

The frustration we have had in the last few months has left us angry at the system and worried for our future.
The next few months are going to be extremely worrying with a very real possibility of losing everything we’ve worked for.

To try and put things into perspective, this is what has happened since October.

In October Ian went to the GP to talk about the issues he’s been having and was signed off from work to rest.
The GP referred Ian to our local Muscular Skeletal Service (MSK) as and URGENT referral and Ian was advised to contact his rheumatology team to check for arthritic flare up. Rhuematology pulled forward an appointment.
Rhuematology accepted that he was having a flare up but they could see no issues being caused by it, therefore gave him a cortozone injection and said they would review him in 6 months. This week he finally got a review date in August!
The week after this, the numbness spread from his neck and arms and worryingly into his face and he started getting dizzy spells. Dizzy spells that he gets every time he stands up and has even had him hitting the floor!!
After several more reviews with the GP, blood tests were done and he got diagnosed as type 2 diabetic. Just to add to his problems!!
Following a review with a senior GP at the practice, he was also found to have very high blood pressure (not surprised considering all the worry!) and the Dr also accepted the possibiity of a re-occurance of the neck vertebrea issue from the past.
This GP tried escalate the MSK referral several times but MSK would not respond to him. Ian also Ian found it impossible to get hold of MKS so the GP bypassed the system and begged Bedford Hospital to give him and urgent neck MRI.
Bedford Hospital accepted this request and in December an MRI was done which highlighted issues with C5, C6 and C7 vertebrea, with a recommendation for referral to nuerosurgery at Addenbrookes.
This request had to go BACK through MSK!!.
Ian finally got a reply from Addenbookes in January and was given a PHONE consultation on April 12th!!!!! So much for urgent!!
The GP also arranged a brain MRI due to the dizzy spells. This was done in January and luckily did not show any worrying issues.
MSK arranged a review appointment in early January for possibe carpel tunnel but this was pushed back two weeks.
At this consultation it was confirmed that they believe Ian did have carpel tunnel issues (even though he has already previously had nerve conduction tests a couple of years ago, through MSK, to prove this but nothing was done at that time)
MSK referred for more nerve conduction testing which was finally done at the end of March and this confirmed severe carpel tunnel syndrome in both wrists and severe cubital tunnel syndrome in both elbows.
Ian has now been referred for surgical ‘opinion’.
It took 3 weeks to review the report from this testing and at that point, Ian has now been referred for surgery to Bedford Hospital and they apparantly have a 20 week waiting list just to SEE a surgeon. Who knows when the surgery will happen?

With all of this, we still have no idea what the outcome will be from the phone consultation with addenbrookes next week about his neck. I suspect they will want to physically see him and he will be back on a waiting list for that appointment.

It has been extremely frustrating at every turn.
Ian has obviously got two different issues on the go but nobody is looking at him as a whole.
MSK are absolutely bloody useless and can’t handle the service they have been contracted to do.
Nobody is seeing the fact that this is now having a HUGE impact on our lives.
Ian may well have to be medically discharged from his job.
There is a very real possibility that we could lose the house we have lived in for the last ten years.
We still have two kids living with us, but because they are both ‘adults’ they will not be taken into consideration.
So it’s now not just affecting Ian and me, it’s affecting them too.

I am getting extremely worried about what will happen over the next year.
I have no idea where we will be by the end of this year or even if Ian will have his issues sorted.
We are not living, we are existing and we are at the mercy of the NHS.
Technically at the mercy of the MSK service which is beyond useless.

Ironically, the only solution to possibly speed this all up is to go through the MSK private service who have just quoted £2000 for surgery on just one wrist (not the elbow) with an initial consulatation fee of £150 – £250, bareing in mind, they AREADY have a consultation stating he needs surgery!!!
We simply can’t afford that.
The money we have set asside at the moment is to tide us over for a few months while we sort benefits out if Ian loses his job without destroying what’s left of his pension.

So for anyone that knows me personally, please forgive me if I seem a bit pensive and quiet when I see you.
I’m actually worrying about an awful lot at the moment.

On the bright side, my job is going really well!!
I’m thoroughly enjoying it and it is the only real thing taking my mind off of everything at the moment.

Categories: General diary entries

6 replies »

  1. Ps
    If you want to start a just giving page to raise money for private surgery I would be more than happy to contributeX
    The last message was from me!!!

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