Thank you

Thank you to everyone who has supported us over the last few weeks - we are amazed at how many people have been so generous. We have also had people who supported us outside of JustGiving which has covered the remaining costs of the operation.

The page will remain active over the next month and we will be posting updates regularly.

Gastroparesis and me

What was your day like yesterday? What did you eat? Did you see friends, did you make it to the gym, or were you stuck at the office working late?

For me every day, is a different rhythm to this; yesterday I was sick 28 times and that's normal.

Life with Gastroparesis means that I am sick between 20 - 30 times every single day. This is also combined with nausea, stomach pain and having to carefully plan out what to do with every bit of energy, as I have so little. The last day I wasn't sick was the 10th July 2015.

Life is dominated by trying to control these symptoms along with trips to the hospital when it becomes difficult Most cases of Gastroparesis can be controlled by anti-sickness medication, but unfortunately my symptoms are too severe. I am now only able to eat and drink via a feeding tube.

The great news is that there is a really effective treatment which has a 70% chance of removing these symptoms - and it's funded by the NHS!

The bad news is that, if you live in England you can't get access to this NHS treatment and have to fund it yourself.

My wife, Hannah, and I have spent the last three years going through the application process with NHS England to try and get this treatment funded but to no avail. During this time no applications for Gastric pacemakers have been accepted in England despite them being available in Scotland and Northern Ireland.

This has dominated mine and Hannah's 20’s. Now that we are both 29, we hope to have a normal life in our 30s. Will you help us raise money to get this gastric pacemaker?

FAQ's

What is Gastroparesis ?

In short, it is a condition where your stomach doesn’t process food properly and it is difficult for it to be digested and absorbed. This results in a large amount of vomiting, nausea, pain and lack of energy. Also when symptoms are really severe, or the feeding tube stops working, I end up in hospital. This has happened six times in the last year.

What does this mean?

I have really severe symptoms which means that I vomit 20 - 30 times a day. Anything I eat will remain in my stomach, but does not get absorbed, and food can sit in my stomach for more than twelve hours. On bad days I cannot even keep down water to stay hydrated. Nausea and low energy levels also have a significant impact on what I can do.

All of my calories and nutrients are provided via a feeding tube which runs for 16 hours every day.

You can see a month's worth of food below.

Can you eat anything?

Yes - but...

Anything I eat will result in me being sick - but this could be anytime from 30 minutes until 12 hours later. On bad days I can't even drink water - thankfully I have my feeding tube which gives me enough nutrition and water.

I used to have one which was really visible, but now have one which is more discrete.

What is a gastric pacemaker?

A gastric pacemaker helps your stomach move food through it. It helps reduce vomiting and nausea and can even remove the need for a feeding tube. This treatment is considered the best option after all other treatments have been tried.

Why is it not funded on the NHS?

The NHS doesn’t fund all treatments and when it comes to treatments for rare conditions it can be difficult to get funding. In Scotland and Northern Ireland gastric pacemakers are offered as part of the NHS but in England you have to apply for the funding.

For the last three years I have been trying to secure NHS funding for this treatment but my applications have has been turned down. There have been no successful granting applications for a gastric pacemaker in England during this time despite, it being a cost effect treatment with a good success rate.

Patients in England who need this surgery have to fund this operation themselves. The cost of this treatment is between £17,859 and £27,021 depending on the complexity.