NHS waiting list crisis: How to find support whilst being stuck waiting for a diagnosis

It has been a hot topic in the news over the last few months, possibly even years, that our NHS is at breaking point. Doctor’s are struggling to cope, people are having to wake up at 7:59 am to join a nationwide battle in order to secure an appointment with their GP and waiting times to receive a diagnosis for a large number of conditions are skyrocketing. 

Statistics released by NHS England in March 2024 revealed that the NHS waiting list for diagnostic testing has reached a near all-time high, with 1.58 million patients waiting for a diagnostic test, including endoscopies, imaging scans and physiological measurement examinations as of January 2024. The NHS have a target in England that aims to ensure that less than 1% of people should be left waiting more than six weeks for a diagnostic test. This target has not been met since 2013. 

This unfortunate reality is obviously impacting people of all ages across the UK, including people in their twenties. For final year university student Stacey, whose name has been changed for anonymity reasons, it has been a tiresome fight. 

Stacey was diagnosed with endometriosis, a crippling gynaecological condition, in March 2024. After years of going back and forth with her GP, Stacey was in the very privileged position where she could instead seek private medical care in order to get her diagnosis as quickly as possible. The private diagnosis took two years, which is over four times faster than the UK average diagnosis time of eight years and 10 months

“If I wasn’t able to go private, I believe I would still be waiting for my initial scan, let alone my diagnostic surgery,” says the 21-year-old. “I first went to my GP about my periods when I was 16, but didn’t start pushing for a diagnosis for something until 2022, which is then when I went private.

“I could not imagine if I would have had to wait longer than the two years I did for my official diagnosis. With endo, doctors remove as much of the endometriosis tissue that causes the symptoms as they can during the diagnostic surgery. My diagnosis changed my life.

“My condition consumed my life for those two years, both with the physical symptoms and mental burden of not knowing what was wrong with me. When I tell people how long I had to wait for a diagnosis, their response is ‘well that’s lucky’, which I think shows just how bad the situation is.

“I am in the privileged position where I was able to go private and wish that I wasn’t a ‘lucky one’ for only having to wait two years. That shouldn’t be considered ‘lucky’.”

What these statistics do not include is the waiting time to receive diagnosis for conditions which can’t be diagnosed through straightforward tests, such as ADHD. 

With ADHD, how long someone has to wait appears to be a postcode lottery. Information published by the ADHD UK Charity revealed that adults in Dorset could face a wait of 12 weeks whereas adults in Herefordshire and Worcestershire could be stuck on the waiting list for up to a decade. The charity was left “concerned” that the scale of ADHD waiting lists is not known.

This has left many people who are on the waiting list, like 20-year-old Daniel Hollick, feeling hopeless and frustrated. 

“I’m currently on the waiting list and have been for around two months,” the University of Sheffield student says. “But even before that, the process to get an initial appointment was a long process and then adding on the waiting time to see a specialist is ridiculous. 

“I knew it was going to be a long wait before I started the process, but I still find it so frustrating, especially when having an official diagnosis can make such a difference. I’m quite lucky in the sense that I already have a learning support plan from the university because I already have dyslexia, but that’s not for ADHD. 

“Without a diagnosis, the uni can’t provide support, so I can’t imagine what it’s like for people who are on the waiting list but don’t have any help. People say their lives are completely changed when they are able to access support, medication or even just help to go about their day-to-day life, so something needs to change.”

What can you do whilst you wait?

Messy are by no means medical experts, however, we can offer some words of advice on what you can do to look after yourself when you are facing a mountain to climb for a diagnosis. 

  1. Do not give up. Despite the uphill battle, your diagnosis will be worth it in the long run. Try and persevere and see it through to the final hurdle.
  2. Talk to your friends, family and loved ones. If you are struggling, let people know, so they can try and help and share the burden. Don’t suffer in silence and don’t let the uncertainty consume you. If you are struggling with your mental health as a result of your wait, you can access support from Mind UK or The Samaritans.
  3. Ask why. If you aren’t sure why something is taking so long, ask. Ask if there is anything that can be done to speed things along, such as creating a symptoms diary or going to a different hospital than the one you have been referred to. 
  4. Look for support groups. It can feel reassuring to talk to people who are in the same situation as you and serve as a healthy reminder that you are not alone. For Endometriosis, you can access one here and for ADHD, you can find one here.
  5. Join the fight for change. Many charitable organisations are doing incredible campaign work calling for the government to increase funding for numerous conditions and increased funding for the NHS in order to combat these unprecedented waiting times.

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