8 September 2021
This week, the government have partially revealed their long-awaited plan for fixing social care, which some say is a good step towards dealing with waiting lists. But all is not as it seems.
The government's response
You’ll have probably heard the news that the government announced £36 billion in NHS funding and social care over the next 3 years. We’d welcome signs that they’re taking the problem seriously, but sadly this announcement isn’t all it’s cracked up to be. This funding wouldn’t kick in until April 2022 – and, as we’ve seen through increasing waiting lists, the NHS needs £20 billion in new funding right now.
But it’s not just a question of amounts: a decade of privatisation means that money that goes into the NHS is in danger of leaking out into shareholder profits, as private companies are continually brought in. The Health and Care Bill currently going through Parliament will make these problems worse, by allowing private companies to sit on NHS decision-making boards. That’s why we’re opposing the Bill – our Director, Cat, will speak at an online rally tonight alongside Julie Hesmondhalgh, Michael Rosen and Jon Ashworth MP, Labour’s shadow health secretary. Sign up here.
Making your voices heard
This weekend, we launched our campaign calling for the government to cut waiting lists by funding the NHS properly. We made a huge impact – with photos of our banners being featured in major news outlets like The Times, ITV, The Independent and The Evening Standard.
The reason that our message was so powerful was because of stories from our amazing supporters. 5.5 million people are waiting for treatment – and every one of those people has a story to tell. 400 of you were kind enough to share your stories with us, with some even powerful enough to add to the calls for more NHS funding prominently in the Daily Mirror.
We can’t feature every single one, but you can read some of the most powerful below, to get a sense of how much waiting for treatment affects people from all walks of life.
Our NHS needs us to fight for it, and these patients’ stories show why.
Here’s Dave’s story:
"I am on dialysis for failed kidneys. I have little energy or strength. I am unable to walk far. I have to perform a dialysis exchange 5 times every day and so cannot go out for long or go far as I have to get home to conduct another exchange. I get quite low and have pain most of the time. I initially saw doctors straight away in 2019 - I was rushed to hospital with sepsis and was put on dialysis immediately. I need to have a kidney transplant. I went through a barrage of tests and had an appointment set for March 2020. The service was closed down by COVID and I am still waiting on a date. Waiting erodes my life and my ability to enjoy it. If I could just see progress I could manage better."
Jane, who is 81, told us:
"I'm suffering from failed orthopaedic surgery for a broken humerus (7 years ago). The arm is becoming increasingly dysfunctional and painful. I am my husband's sole carer, so this impacts that role profoundly and will soon incapacitate me for certain procedures I carry out for him.
When I enquired, I was told that people on the 'priority 3' list that I'm on had been waiting already well over a year. So effectively, I'm waiting indefinitely, unless things 'get a lot worse, in which case contact us and we'll move you up the priority scale'.
Now I'm extremely worried that there will be a catastrophic failure which will force a crisis in our care arrangements and make the operation more difficult."
74-year-old Ron’s story:
"Like most seniors, I have varicose veins. It was only in February 2020, when I suffered a dramatic and unstoppable bleed from my ankle and had to call for an ambulance, did it become clear that mine were very bad indeed and needed treatment.
I saw a doctor in A&E, who referred me to specialists. I need veins stripped from both legs. I am aware of more blisters on the surface of my ankles like the one that was damaged and caused the initial bleed. The skin over them is thin and fragile.
The diagnosis was pre-covid, and at the time it looked like things would move quickly. Since March 2020 I've heard nothing. Having paid quite a lot for cataract treatment, I can't afford to pay for two more private operations."
And a former NHS worker’s story:
"I worked for the NHS for 35 years, so using private medicine goes against everything I believe in. However, at 73 years of age, and in constant pain, I feel I have no choice. I need surgery for degenerative disc disease. It’s severely reduced what I can do - it’s affected everything: my movement, my sleep and my mood. I first received treatment immediately, but I was told there would be a year’s wait before I could have surgery because of the pandemic. I made the very reluctant decision to go private because I can’t stand the pain - I can have surgery in 3 to 4 weeks. I’ve had to use all of my savings to fund it and I feel very vulnerable."
This story from a 31-year-old mother of three:
"I am unable to care for my three children or do any activities that require me to lift my hands, even washing or brushing my hair is a challenge. I need surgery on both arms for carpal tunnel syndrome, and I need a neurological examination as I have a spinal implant. I’ve been waiting over 18 months. My symptoms have got worse over this time. If this continues I don't know what I will do. I feel like I am being driven insane from pain and itching, but I cannot afford anything private. It’s like I'm struggling to survive."
A story from a 21-year-old student:
"My immune system is severely compromised due to Crohn’s disease medication which means I get infections regularly. Tonsilitis is the most common. After having it 7 times in a year including a hospital admission I was referred for a tonsillectomy in January 2020. I’ve been waiting for a surgery date for over a year now and since my initial referral I have had tonsillitis many times more. The antibiotics I’ve been on have also worsened my Crohn’s disease - and I’m struggling to get an appointment for that. Having so many infections has had a massive impact on my university work and part-time work. I’m exhausted every day and anxious from knowing that my next infection is round the corner. It’s very stressful and worrying - I’d hoped I’d have had the treatment before I start my final year at uni."
And a story from Dani, who is 52:
“I am experiencing extremely heavy vaginal bleeding, probably caused by an endometrial polyp, which was found during a scan in early 2020. I have been waiting since then for it to be removed. This heavy bleeding is both physically and mentally exhausting. I recently went back to the GP again and had my blood tested, and they found that my iron levels are low. I had the heaviest period I have ever had in my life last month, while on holiday in a rented house. This was very stressful - luckily we were able to clean everything that had been stained, but it left me feeling anxious and unable to sleep soundly after I returned home. I have had episodes of flooding while at work - one day I had to rush to a charity shop in my lunch hour and buy new trousers. The hospital originally told me that they like to remove polyps as there is a small chance they can become cancerous. I try not to think about that. Overall, I would say it is very draining.
I thought that my heavy periods were just a symptom of perimenopause, but they became longer (sometimes over 3 weeks of continuous bleeding) and heavier, so I was beginning to worry. I was called in for a routine 40+ health check, so I talked to the nurse about it and she said I should go to the GP. The GP referred me to the local hospital and they did a scan, which found a fibroid and a polyp (which is what the GP suspected).
I had an appointment scheduled for April 2020, which was not really a long wait at all, but this was cancelled due to the pandemic. Of course, I understood this. Later in the summer, when things seemed to be calming down, I phoned the gynaecology department at the hospital and they said I was still on the waiting list, and I would be contacted in due course. Meanwhile, my periods calmed down for a few months, but recently they have become much worse again. I never heard anything from the hospital again, until I asked my GP to write to them. They have now offered me an appointment for early September. I have waited 17 months longer than I thought I would need to.”
A 64-year-old woman in Sussex shared her story:
"I have a bladder and rectal prolapse and am getting recurrent infections.
I tried last summer but it was very difficult to get an appointment - that was in June 2020. I finally got an appointment in September and saw a consultant very quickly on 3rd October.
I was able to see a doctor after a couple of months. I had been diagnosed with interstitial cystitis but in fact the consultant has said that I have a severe bladder prolapse.
I needed a pessary ring but this has caused recurrent infections and so I will need a hysterectomy. I was told I would have one December 2021. Then I was told it would be September 2021 that I would come to the top of the waiting list.
My partner has had prostate cancer and had radiotherapy treatment just as the first lockdown was happening. He has been left having to catheterize and was in a lot of discomfort from the stay-in catheters initially and we couldn't contact anyone because the urology department at the hospital was closed. So he was housebound for 2 months unnecessarily. He has been told that his TURPS operation will be in August 2021 but he has heard nothing from the hospital and we are now in August.
I am worried as we will need to care for each other after the operations so need to have an interval between his and mine so that we can recover enough to look after the other one."
A 72-year-old from Northern Ireland says:
"I'm waiting for a procedure on my jaw. I actually got as far as a pre-operation assessment, after tests taking 6 months. I was told I was urgent and should be called for the procedure within 13 weeks. That was 2 years ago."
A 63-year-old nurse’s story:
"I am unable to use my thumb on my dominant hand. It's stuck in the straight position. I can't do anything that requires a grip or turn anything like a key.
I need to be seen by an orthopaedic surgeon as I have complex needs. Certainly a steroid injection at the very least but possibly surgery.
I have been told I won't get an NHS appointment before 26 weeks.
I'm forced to pay for a private appointment. But I can't afford to pay for any treatment I might need. I guess I will then need to wait even longer. I'm saving to fly to see my daughter who lives in Australia, I will be paying a Dr from that savings fund. Even without the travel restrictions of covid, it’s going to add several more months before I can go to see her."
So - what's next?
These stories show how much we need to keep fighting so that our universal free healthcare service stays that way. Cuts and privatisation are damaging our NHS. The new Health and Care Bill is currently going through Parliament and we have worked with MPs to propose key amendments to kick private companies off of decision-making boards. We have a series of actions planned as opposition to the Bill ramps up throughout the autumn - we hope you'll join us to keep up the fight!