This post continues on from my last instalment and the frustrations I was having with the NHS and getting an appointment to see a gastroenterologist in London. Quick recap: 7 weeks + after seeing my GP, I still didn’t have an appointment to see a consultant. It wasn’t that I had an appointment and had to wait for 3 months for it. I didn’t even have an appointment at all. My referral kept getting rejected.
When I last posted, after speaking with my GP, I’d planned on collecting my ‘choose and book’ appointment details from them the next morning, believing it was all sorted at last. But no! Within an hour of publishing that post, I got an email from the GP saying not to bother. There were still issues and it wasn’t ready. AAARGH!!
I was told the reason I was rejected was basically because they didn’t have any appointments available to offer me within the “required time frame”. So instead of them being penalised, the hospital rejected my referral! After some stern emails with the GP, including suggesting the possibility of being referred to a different hospital, I was told to sit tight for a week. They were on the case. Low and behold, out of the blue around a week later I received a letter in the post from Royal London Hospital! I had an appointment!!! Finally!! And to my surprise, it was only a few weeks away. My incessant pestering paid off!
Last Thursday I turned up for my appointment feeling apprehensive but strangely excited! From the beginning, it felt quite different to the waiting room of my usual doctor’s offices back in Sydney! The receptionists certainly aren’t as friendly or personable as the lovely Shannon or Rhonda who I’ve gotten to know well over the years. It’s a slightly different set up though, and managing the admin for a big clinic within an NHS hospital like this in central London wouldn’t be easy. Still … a smile wouldn’t hurt!!
20 minutes BEFORE my scheduled appointment a nurse came out and called my name! I was shocked!! She only took my weight and height though, and then it was back to the waiting room!!!
Not long after (around 15 minutes after my appointment time), I was called through by a very lovely IBD nurse named Ana. She explained I wouldn’t actually be seeing a doctor today, but in order to get me in for an appointment quicker, they had booked me to see her. Fine by me! I was just glad to be seen, as long as I could organise scripts for my medication and ostomy supplies!
Ana took her time getting a detailed history and reading through the letters I’d brought with me from home. I was in with her for over ½ hour. She explained everything clearly, and said she would organise letters to my GP who will then be able to prescribe my medication, and gave me a contact for the stoma nurses to sort out my supplies. She’d even pre-read my notes and had proactively contacted the stoma nurse team about organising bags if I needed any urgently that day, because she was worried due to the delay I might be in dire need!
She organised blood tests, and explained I would need them every 3-4 months and to keep track of results in a monitoring booklet for the ongoing azathioprine prescriptions. She gave me a contact number for the IBD team there and her direct email address (which I have already emailed and she replied straight away!). She would send my details including the ostomy products I use to the stoma nurse team, and the very next day I got a call from them, so that is now all under way too.
She asked me to make an appointment to see the consultant Doctor in 3-4 months, but if I needed anything in the meantime to just call.
Other than sorting prescriptions and supplies, the main thing we discussed was the question of reassessment. Since it’s been a while since my surgery, she suggested it might be worthwhile doing some tests to see how my small bowel is looking. I was a little taken aback. I thought they may question the ongoing prescription for Imuran, but I hadn’t thought of this. She said there was no urgency and it was up to me for my own piece of mind, but if she was me, she thought it might be something I would like to do. Essentially it would be an MRI of the small bowel and an ileoscopy. We agreed I should have a think about it and discuss it with the Doctor at my next appointment (which has been booked for early August). I tend to be of the mind-set that I would rather leave well enough alone. I feel like if there were any issues with my small bowel, I would have symptoms. I would be able to tell if something was off. I know what can happen when doctors start prodding and poking!! If things are status quo in August, I think I will opt not to have any tests, but I have a few months to think about it and of course discuss further with the Doctor.
Things are now moving along very nicely. I’ve already received the letter from the IBD nurse in the mail along with my blood test results (2 days after my appointment / test – that’s more like it!!), which means my GP should have also received them. I’ve made an appointment to see my GP in 2 weeks, and they should now be able to manage my prescriptions.
The stoma therapy nurse (STN) Lyn I spoke to was also incredibly helpful. There is no need for me to see them (unless I want to), and she’s already started the ball rolling to organise my ostomy supplies. It’s a bit of a process in terms of them sending the GP a list of products I can use, the GP then writes the scripts, but if I want to change anything or use/add a different product, that needs to go back through the stoma nurses. Some GPs can also be funny about writing scripts for certain products, but as long as you don’t abuse the system, I think it’s generally quite reasonable. There’s the option of taking the script to a pharmacy who can order things in, or go via a delivery company. The delivery company seems the done thing, so I am going with that. Lyn is sending the list to my GP and setting me up with a delivery company. There are several delivery companies to choose from, but I am starting off with the one she recommended called Fittleworth (who I know stock the brand of bag I use). We should even be able to set up an electronic script that my GP sends them directly and they have a standing order reminder service.
A big relief is that all the ostomy products I used at home are available here except for the barrier wipes, but they will just request a different brand. No biggie. Main thing is the same bag is available (Dansac Novalife Convex) – phew!!! The overall process is quite different to the Australian process, but I’m sure I will get used to it quickly. Lyn also advised that because I have a permanent stoma, I should be able to get an exemption form from GP so none of the supplies (or even other medication) cost anything. Once I’ve seen the GP in a few weeks and had contact with Fittleworth, hopefully that’s that. Easy!
Whilst the initial appointment making process was incredibly frustrating, and it took over 2 months to secure an appointment date, at least once it was sorted, I didn’t have to wait long. Now that I’ve been seen and spoken to both the IBD and Stoma nurse, I am feeling so much better about it all. Even the IBD nurse said she couldn’t understand why my referral had been rejected and I’d had all this trouble. She agreed, also coming from another country, that the system could be frustrating and confusing, but said that now I’m in, the care here really is very good, which I fully respect it is.
Hopefully it’s smooth sailing (or smooth pooping as I like to say!!) from here on in!
Thanks for listening,