NHS for Some Not All

My son Tom was diagnosed with Idiopathic Gastroparesis aged 16, which effectively means his stomach is paralysed. It’s a rare and debilitating condition making something as simple as eating virtually impossible, causes vomiting several time a day, constant nausea & tummy pain, discomfort & bloating and difficulty controlling your blood sugar levels. However, there is a ray of hope for people with this condition and when he was 17, he was fitted with a gastric pacemaker and it changed his life!

Tom is now 25, the pacemaker battery has died and needs replacing, the average battery life expectancy is 7-10 years (depending on the voltage) and Tom has had his for 8 years. NHS England will not approve his surgery, yet if we lived in Scotland, Wales or Ireland they would! It’s not even a financial based decision, as caring for a patient with Gastroparesis with a feeding tube and possible A&E admissions for dehydration and other complications, costs more per year than a pacemaker being fitted, that will last 7-10 years.

At the time the NHS did not routinely fit gastric pacemakers, therefore, Tom’s pacemaker was fitted through the private medical insurance I had through work. It was not a straightforward process, it took months of me fighting for my son to have a better quality of life than a feeding tube, lying in bed all day wasting away, but eventually it was approved on humanitarian grounds. The gastric pacemaker was such a success for him, it allowed him to eat, finish college, learn to drive, start working, complete a degree and basically live life a relatively normal and rewarding life. At the time we were told that his ongoing care to monitor the settings and any issues in the future would be covered by the NHS, as the gastric pacemaker was proven to work for him. However, when the battery showed signs of running out, his consultant informed him that NHS England were no longer agreeing the surgery. Tom has private medical cover through his work, so pursued its replacement on humanitarian grounds, as it was agreed by my insurer before, but despite an appeal, this was declined. NHS England have also been asked to consider it again and refused.

It makes me very angry that if we lived in another part of the United Kingdom, Tom’s surgery would be covered. Matt Hancock spoke in Parliament in June 2021, when another case was raised and the surgery required was not available to someone through the NHS because of where they lived, saying he wanted to ensure the NHS was there for all, as one Nation. We are working with our local MP to take Tom’s case to Parliament, but this won’t be a change that’s made quickly. We hope for Tom and others, by the next time someone needs their first gastric pacemaker or a replacement, it will be available to all based on need and not where you live in the United Kingdom.

Tom is left with no choice but to fund this for himself and we’ve explored self-pay through the NHS, however, we can’t be given timeline for this and are told it’s likely he’d have to wait for a year or more, so this is not a viable option right now. We are therefore having to look at private funding, however, this has its issues also, as NHS hospitals need to keep their theatre time for surgery backlogs built up during the COVID lockdown, so a private hospital is the only option, hence the sum required. All I want for Christmas, is to see my son smile again and be able to eat his Christmas dinner with the rest of the family. This surgery will give him back his life, get him back to his work and give him back his quality of life! All donations will be very gratefully received, thank you from the bottom of our hearts to you all.