Life waiting for vital NHS treatment: ‘The pain and anguish are too much’

Almost 1.2 million people in England are waiting more than six months for essential NHS treatment such as brain surgery due to a backlog caused by the pandemic.

As seniors doctors warn the long delays are leaving patients in pain, three people tell the Guardian how their lives and health have been affected.

‘The longer I wait, the worse I fear my condition may deteriorate’

After two years of being in pain I was diagnosed in July with ankylosing spondylitis, which is when the spine becomes inflamed. I’m waiting for an appointment to see a specialist in the rheumatology department and have been told it will take 44 weeks due to the impact Covid has had, and because they can only see a handful of people a day. Being underfunded by the government probably doesn’t help.

My condition is very painful, especially in the night between the hours of 1am and 5am where I have to get up and roll over every so often, which disturbs my sleep. I’m on temporary pain relief but it’s only short term and is harmful for the stomach.

I could look at being treated privately where I could be seen within two weeks. But as a Labour supporter I’d prefer not to perpetuate the two-tier health system that seems to be a growing concern in the UK. The longer I wait for treatment the worse I fear my condition may deteriorate. Daniel, 30, senior graphic designer, Stockport

‘My body’s being damaged by not having my treatment’

I have Behçet’s disease, a rare condition that causes inflammation of the blood vessels and tissues. I’m supposed to have plasma exchange treatment every six weeks to remove the antibody proteins that are doing the damage from my bloodstream. Covid has paused my treatment twice. I’m chronically unwell and it’s resulted in me being absent from work for six months.

It stopped the first time in May 2020 because the unit where the plasma machines are has to be next to the intensive care unit in case anything else goes wrong with the treatment. But the unit got reassigned to Covid patients, and the plasma machines were moved far away from ICU, meaning they could only safely treat one patient at a time.

My treatment started again in July but they spaced it out to every eight weeks. Then on Boxing Day, the hospital cancelled the treatment because they’re only treating emergencies and Covid. They’ve given me immunotherapy, which in some ways helps, but my white blood cell count is extremely low.

My body’s being damaged by not having my treatment. I have extremely high blood pressure now. My heart rate goes crazy even when I’m sat watching TV. I get confused when talking. I haven’t really had any kind of personal life for 18 months. It’s just a complete nightmare. Thomas, 40, social worker, London

‘The pain and anguish I endure became too much to bear’

I was scheduled to have knee surgery in April 2020 after waiting for seven to eight months for the operation. Then the pandemic hit and the waiting list went out of the window.

I also have fibromyalgia, Ehlers-Danlos syndrome, which causes joint hypermobility and fatigue, and ankylosing spondylitis in my lumbar spine. I have to walk with a stick. The untreated knee pain has aggravated all those other conditions.

Making a cup of tea or getting dressed in the morning is enough for me to go and lie down for half an hour. Because I can’t put the full weight on the bad knee it means the other side of my body takes the brunt of it. The pain and mental anguish I suffer and endure daily became too much to bear.

I wrote a letter in October to ask if anything could be done about my operation. I received a letter from my consultant in November and went in for a pre-op assessment. Then the January 2021 lockdown happened and I didn’t hear anything more about the surgery.

In June, I received another letter to come for another pre-op assessment as the first one had expired. I now have the operation scheduled for 25 August but have been told this could be cancelled at the last minute. So I have my fingers crossed. Kali Blake, 60, marketing executive for the counselling charity Relate, Surrey