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Continuous delay of treatment by NHS

Emma52

After attending a private hospital I was told by their doctor that he was disgusted with how long they had left me in pain without sending me to a pain clinic (3years). He prescribed medication which they could have prescribed but chose not to and now my poor husband is attempting to pay for Pain clinic sessions himself. I've stopped eating properly and stay in bed most of the time so he doesn't see me as I think it will only make him more anxious. Has anyone else having problems with delayed treatment?

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Holly_Alumni

Hi @Emma52 wow, I'm really shocked by that feedback from your private hospital. 3 years is an incredibly long time to be in pain, without the appropriate support. I'm so sorry you've had to go private to make this happen.

It sounds like things are moving in a better direction now and I wish you all the best with your treatment. Please keep us updated on how things are going (if you don't mind doing that).

anisty

Yes, it's absolutely shocking just now. We have had to pay for some things privately too.

My husband has a hereditary heart condition (hypotrophic cardiomyopathy) All our kids have a 50:50 chance of having inherited it.

It is the leading cause of young, outwardly healthy children and young adults to drop dead. You know when you hear of kids that collapse in the pool or on the football pitch and die - this is what they have.

So - when my 15 yr old daughter who is slim (healthy slim) told me she was breathless and dizzy in gym at school, away we went to the GP.

2 YEARS later she finally got her heart scan earlier this year. The only reason i kept calm is that CRY, the heart charity had scanned her heart 2 years ago and it was fine. The charity said NICE guidelines hadn't been followed at all - she should have been referred for urgent heart scan as soon as she presented at the GP 2 yrs ago.

She was referred for URGENT laporoscopy August 24 as she has suspected endometriosis. Still waiting.

My hubby went to GP - bearing in mind he has the heart condition - asking for a test for sleep apnoea. Told it was a 2 yr wait. Paid private - he has severe sleep apnoea. Now have to buy CPAP machine privately. £179 for the test. 6 to 8 hundred for a machine.

In 2023, our daughter took an overdose. She wasn't able to say why but i put forward the points she was in a lot of pain with this possible endometriosis and i also mentioned autism was possible as strong family history and she was getting a lot of bad migraines.

She had 3 sessions at CAMHS. Totally useless with last min cancellations and no follow through on anything.

They agreed to add her to the autism wait list. Then sent her a letter saying she's been discharged from CAMHS!!

So - another 2k there getting a private asst. She is autistic.

No help service.

noonebelieves

@Emma52 ,

That sounds like an incredibly difficult and frustrating experience, and I’m really sorry you’ve had to go through this.
As someone who also suffers from chronic pain, I completely understand the struggle of long waiting times and feeling neglected by the system. I waited 14 months just to see a pain consultant, then another 4-5 months between each recommended treatment—epidurals, facet joint injections, nerve blocks, etc. And after all that, I was left waiting over a year for CBT. But a three-year wait just to be referred to a pain clinic is beyond appalling. I’ve never heard of such an extreme delay unless something went wrong in the system, like a lost referral or missed communication.

It’s really worrying that you had to go private just to get the basic care you should have received on the NHS. I hope the private doctor’s support has helped in some way, though I can only imagine the added stress this puts on both you and your husband, especially financially. Was the private consultation arranged by the NHS to ease waiting times, or did you have to self-fund(as your husband did)or go through insurance?

If you haven’t already, it may be worth escalating your concerns through an official complaint. In my case, I wouldn’t have even had my first appointment in 14 months if I hadn’t raised my concerns through PALS (Patient Advice and Liaison Service). It didn’t fix everything, but it at least got things moving. If you decide to go down the formal route, PALS can guide you through the complaint process, or if you need extra support, you can seek help from a patient advocacy service. I’m in the West Midlands and found POhWER really helpful when I needed advocacy.

If a formal complaint feels too overwhelming, even an informal approach via PALS might help push things forward. Sadly, it often takes speaking up to get the treatment we should be getting without a fight.

I really hope you get the care you deserve soon. No one should be left suffering like this, and you definitely shouldn’t have to go through it alone. Please take care, and I truly hope everything works out well for you.

Emma52

Things are going from bad to worse. I am now writing down the name of any health professional I speak to/get fobbed off by. They have now stopped my sleeping tablets, I also have myoclonus and can not sleep without them. The receptionist said the GP was due to phone me today by 4pm. Didn't happen! So I now have no repeat prescription for the pain meds the private doctor prescribed me. No sleeping pills left in 3 days time. I think they would rather I had a second heart attack to save the the time and money than help me. I will phone them again at 5pm but expect I will be fobbed off again. I am unable to go to the gp surgery myself and can not find an advocate in my area. Finding it difficult not to feel dispair.

Holly_Alumni

Hi @Emma52 Oh no, I'm really sorry. It's just added stress you don't need. Is there anyway to get an emergency repeat prescription or am I completely off base here?

I don't blame you for making a record. Hopefully you've spoken to them now and you're able to get something in place before you run out.

Take it easy 💛

Emma52

I finally got a call from my GP last night. She did a prescription that will be ready to collect in 3 working days. This means I will be going without pain medication this weekend and to be honest it has brought me to an all time low. It is what it is.

Holly_Alumni

@Emma52 I'm really sorry. I hope that this weekend isn't too bad for you. 💛

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