Angry at long nhs waits

[glitterwobbles]

I get daily headaches and nerve pain in arms and legs.Was diagnosed with cervical myelopathy last summer.
Was referred to another hospital as mine does not have any neurosurgeons and need surgery to prevent it getting worse and possible paralysis.
Have been told that the wait for an appointment is 18 months.
I know that the NHS is struggling after covid. But I have a condition that will get worse and if i had the money could have the surgery privately within weeks.
Just feel let down by NHS and as if the list keeps getting longer as when I was referred it was 10 months. Feel as if I will never get to the top

Meeting last week in my area , we have difficulty recruiting because we pay a band below other local trusts for nurses and HCA doing exactly the same job and we treat new starters abysmally so retention is a problem too.
So they decide to develop a new post, these people will get paid to do what a lot of the band 5's do already, as a band 6, with the added advantage of not being able to progress any further up the pay scale, unless they do additional training for a year and then as the other people who have completed this training, will still get paid at band 6. There are very few options to move any further up the food chain, so most will use this opportunity to move away from the service, having beefed up their CV.

They have then reduced the capacity of the service overall to do the job it does, remember they find it very difficult to recruit or retain, by reducing the number of band 5's, which in turn will put pressure on those still doing the actual job, which in turn will effect retention.
Band 5's in my area, do a lot of the 'management' type jobs, so allocating work, dealing with staff sickness and re-allocating work, working as shift lead, so triaging and dealing with new referrals some of which need to be seen immediately ( because they are dying and are in pain ) and being entirely responsible for a caseload of approx 350 people for several hours a day. The top of the pay scale for this level of responsibility is less than 32k.

I do g assume it is inefficient- I know it is

3 letters in 1 post. 1 making an appointment. I cancelling it. 1 remaking it 5 minutes earlier

turned up with 30 other people for an appointment and thd consultant was on holiday . No apology- it was clearly our fault

cancer patient at 4am on floor in a&e due to early discharge. Multiple times

@Wrongkindofovercoat
Newly qualified nurses are Band 5, thats a national agreement, your trust cannot just change that.

Can't comment on the rest of the post as it sounds like your not talking about a UK trust.

@Alexandra2001 band 5 isn't just for newly qualified staff, where on earth are you getting that information from ? If you look at an average ward, the majority of nurses will be band 5 and a lot will not be newly qualified. Yes I work in an English trust.

You said this... we have difficulty recruiting because we pay a band below other local trusts for nurses and HCA doing exactly the same job and we treat new starters abysmally so retention is a problem too

Majority of nurses are Band 5 and you said your trust recruits at a band below this.... i.e band 4 which is against the agenda for change pay scales for fully qualified nurses.
Trusts don't recruit nurses at band 6 unless into specialist roles.
Apologies if i have misunderstood

Agree on retention/treatment, some trusts haven't a clue, the people at the top are to removed from the ward experience.

@glitterwobbles I know this is an old thread, but how are you doing now? I have been waiting “only” 10 months to be seen by a neurosurgeon for cervical spondylotic myelopathy (all the while losing sensation and function in my right arm and leg) so I can empathise with your pain and frustration. At this point having my head chopped off to stop the constant neck and shoulder pain doesn’t seem such a bad idea! Have you been able to make progress with it since you posted?

Interesting. I am into my third year of waiting for surgery, but the average waiting time for treatment according to that document is 18 weeks

@Marisquita I totally emphasize with wanting to chop your head off. I'm now on the waiting list for surgery. The surgeon said it would be 16-18 weeks when I saw him on the 1st Dec.
I spoke to the secretary in Jan as I broke my shoulder. She laughed when I told her the time frame.
It's very frustrating as it's now 2 years since I had the scan which identified cervical myelopathy. My condition has deteriorated in that time but no one seems to care.
Keep badgering the hospital for an appointment.
Hope you get your appointment soon.

Don't vote Tory. They're to blame

I am so so sorry about your wait times. I live in the Czech Republic now (I'm from the UK though), and was recently admitted to hospital as I was constantly short of breathe. My GP took an ECG and immediately called an ambulance to take me to the nearest hospital. No wait time, I saw 2 doctors immediately who took a history, blood samples, another ECG and within 2 hours I had a CT scan and lung ultrasound. They came and explained my results to me in English, and told me I had suspected pulmonary hypertension but would need a right heart catheterisation to confirm. I was sent home and told to come back the next morning where I would be admitted to hospital for 5 days for more tests and to monitor me on medication. The next day in hospital I had my catheterisation operation and PH was confirmed. They immediately started medication.

This disease I have is progressive and terminal. By getting my diagnosis so fast it means my condition is much more manageable and I will be able to live a normal life for a long time on these meds (hopefully). Also, the mental health damage was massively reduced because I didn't have to wait in limbo wondering what was wrong.

I have since heard in the UK (and even in America), people wait often up to 2 years to get a diagnosis once reporting symptoms to their GP. I waited 2 days. I'm only 38 and have two very young children so this has honestly saved my family.

Czech is often viewed as a less developed country than the UK, but I believe living here saved my life.

And how was my care funded? Through their nationalised health service. It works here, phenomenally well...my meds are very expensive but I pay a nominal amount and they don't throw you out of hospital because they need the bed etc.

So it can be done, other countries are doing it...I blame the tories...something needs to be done and this experience has emphasised this to me more than ever.

I hope you get your appointment soon and you get the help and care you need ❤️

1. Phone the hospital everyday to ask about cancellations, they come up frequently or extra clinics are added.

1. Go back to your doctor and stress the need for an urgent referral as pain has got a lot worse.

1. Remember there are hundreds of other people in the same boat as you, it's often the ones that shout the loudest get seen sooner.

@thisismethen Sorry to hear about your PH. It sounds like you are receiving excellent care but I just wanted to mention that my elderly father was cured of his PH by surgery (pulmonary endarterectomy) at the age of 86. I was amazed that the hospital (Papworth) accepted him for surgery at his advanced age, but they did, and it’s been transformative for him. Three years on he’s in excellent fettle. All credit to Papworth, which we experienced as the NHS at its best.

@glitterwobbles Two years? TWO YEARS? While your spinal cord is accruing damage every day? Can you be referred up to Queen Square? You’d be ahead of me in their queue, but you deserve to be. I’m so sorry.

@Marisquita that is amazing service for your dad! I always always praised the NHS as my dad worked for them all his life, but when he was dying of skin cancer they let him down so badly. It was hard to see the lack of care he received in his own hospital. So there are definitely wonderful things about the NHS and amazing pockets where care is still first class but it isn't enough anymore, which is so sad.

And I'm so happy for your dad, unfortunately there are 5 different types of PH and mine is incurable except for a double lung transplant which I wouldn't be eligible for until I am in a bad way. Luckily I am doing well and new medications are coming out all the time, so I am hopeful!!