I’ve been making my way through this report over the past couple of days and thought it would be informative to mention a few bits here. For those of you reading that are unfamiliar with the term IBD, it stands for Inflammatory Bowel Disease. An umbrella term for conditions such as Chrons and Ulcerative Colitis that cause inflammation in the bowel. You can find out more about IBD here.
Over 500,000 people in the UK live with IBD, so either Chrons or Ulcerative Colitis and it impacts their daily lives AND mental health.
Rapid diagnosis is a critical part of the journey, as the sooner it is treated the better the outcomes. Yet large numbers of people delay seeking medical attention from a GP for long periods of time, often resulting in emergency hospital admissions. These delays are then followed by further delays to see a specialist. Which means long periods of time where people are declining in their physical and mental health, and their education and employment are potentially suffering too.
70% of IBD inpatient stays over the past two years were emergency admissions, without surgery.
Only 20% of adults were asked about their mental health during appointments .
Long wait times for surgery are putting peoples short and long term health at risk.
NONE of the 126 adult IBD services in the UK met the IBD standards for multi-discipline-team staffing across the whole of the team.
Now the thing that I would like to make very clear, is that the care and treatment I have received throughout my journey, from the very start, has been nothing but extraordinary! I have said it before, and will say it again, but the people involved in my care have had nothing but my best interests at heart. However, I am a member of a couple of support groups for both IBD and Ostomies and can tell you from what I have read about other peoples journeys, that I seem to have been extremely lucky, and for this I will be eternally grateful.
After seeing my GP I was in and diagnosed within two weeks. This was because I was rushed through on the ‘two week rapid cancer pathway’ because of my family history. Nonetheless though, I have seen many a story in the support groups where people have waited much longer than that, despite being on the same pathway.
My surgery was done and dusted within six weeks of my most recent sigmoidoscopy, despite being an elective decision that I had made. My symptoms were recognised as being severe, and the need for urgent surgery was imperative in order to prevent me from declining further.
Staffing shortages are affecting every part of the NHS, but this was never apparent throughout my time. The staff were always very clear that I could take all the time I needed at every juncture, and that included appointments with my consultant too. I remember the clinic was running really late one Friday afternoon. My appointment was supposed to be at 4pm, and I don’t think I got in until well after 5pm. I went in with the mindset that I would need to be very clear with the facts, so that I wouldn’t hold the team up. I was clearly told that I could take all the time I needed as there was absolutely no rush on their part, and no subconscious signs were ever given by any of the team that they wanted to get this ‘over and done with’ and get me out so they could get home either. As it happens I had spent my extra time in the waiting room making notes about my symptoms and priorities, so was ready for the questions, and was in and out pretty quickly (after all I didn’t want to be there at that time on Friday evening, even if they didn’t mind 🙂 ).
The full report is available here, and it makes for a very interesting read. If you don’t know much about IBD it’s definitely worth a read. If you already know lots about IBD it’s still worth a read, as it’s informative from a national point of view.
It certainly made me realise how exceptionally lucky I have been, and even more grateful than I already was, to the teams that have been (and still are) involved in my care. These people work so hard, and really put me at the centre of my care. So many other services could learn so much from them.
If you are reading this and find yourself in a different position to me, and perhaps feel that the care you are receiving is substandard in some way, then you may find the following document useful. It sets out your rights when it comes to choosing an NHS provider for your care. There are some exceptions to this, one of which is if your treatment is needed urgently, but if you get through the door early enough, then this shouldn’t be a problem.
I guess the point of this post is, in part, to highlight the amazing service I received. In part to highlight the struggles that are so real within the NHS as a whole. And in part to encourage people to seek medical attention as soon as possible if they experience any signs of IBD.
It’s so easy to want to ignore it, after all who really wants people they don’t know poking things up their bum? BUT ultimately getting checked could save your life……. Don’t be embarrassed or ashamed, you won’t be the first hairy bum they have seen, and you certainly won’t be the last! On the whole these people work tirelessly to try and improve your quality of life, let them have that opportunity, and give yourself the best possible chance. Here is a helpful list from the NHS website of what to look out for, along with a link to the full information page on IBD:
Diarrhoea that lasts longer than 4 weeks
Tummy pain
Blood or mucus (clear slime) in your poo
Bleeding from your bottom
Feeling tired all the time
Losing weight without trying
https://www.nhs.uk/conditions/inflammatory-bowel-disease/
Here are the links from earlier in the post above in case you missed them;
IBD National Report –
Patient leaflet, you can choose-
https://www.england.nhs.uk/wp-content/uploads/2017/03/patient-leaflet-digital.pdf
My ileostomy and me 
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