The NHS – Please use responsibly

Unless you’ve been hiding away from the news because of Trump & Brexit fatigue, you can’t have helped but notice that the NHS is having a bit of a crisis in hospitals. And of course over the last few years there have been issues with the numbers of doctors prepared to be GPs (and subsequent availability of appointments) , junior doctor contracts and nurse shortages. Much of this is linked to politics, and I won’t be exploring that in this post – but I’m happy to have a discussion about it with anyone who wants one!

Ulcerative colitis is a chronic condition – there is no cure. As such, I am likely to be a higher than average user of NHS services for all of my life. In the last few years I have been a very heavy user of the NHS – both GP and other primary care services (practice nurses, dressing clinic) and hospitals. I think that all of us have a responsibility to use the NHS responsibly, and those of us who use it more need to do so especially. This was the topic of discussion in January’s #IBDHour which you can read here – and what follows are my thoughts on how we can use, and preserve, the NHS for ourselves and everyone else.

Two Golden Rules

  1. Use the least specialist bit of the NHS that you can for the issue you have

If you need to call 999, then you need to call 999. However, if you can have a phone consultation with your GP, then do that. I’ll go into the different NHS services shortly…

2. If you have an appointment –  use it!

In 2012/13 it was estimated that more than 12 million GP appointments were missed, costing the NHS in excess of £162 million. Around 6.9 million hospital outpatient appointments were missed, with an average cost of £108 per appointment. That is a lot of money, and a lot of missed appointments!


IBD patients seem to have very variable experiences of GPs. If you already have a diagnosis and a treatment plan however, they may be the first port of call – particularly if you get new symptoms or you are not sure what is happening. And GPs are great! They can treat infections, refer on to appropriate specialists, including mental health support and in a flare situation start treatment. However, several GPs have told me that I probably know more about my disease than they do, so don’t be afraid to speak up about what you think is happening.

GPs other key role is as the gateway to other parts of the NHS. When I had abscesses, I couldn’t just rock up to the surgical assessment unit. I could try and call my consultant, but the most reliable and efficient pathway was to see my GP who would assess if oral antibiotics were required or if it had gone beyond that – or often start me on the antibiotics and review me a few days later.

Out of Hours Services

I’ve had great support from my local out of hours service over the years, but it seems that these are patchy. You could see a nurse or GP somewhere near you, and it’s a great alternative to waiting for hours in A&E.


Formerly known as NHS Direct they get a lot of stick, but if you accept that they don’t have specialist knowledge, but do have 24 hour access to medicla professionals and can alert whereever they refer you on to if needed – or send an ambulance – then you should get on fine.


I think that pharmacists are much under used. In #IBDHour we had some great examples of how pharmacists have made life better for people, from warning about the dangers of NSAIDs in IBD to ensuring people had drugs in a form they could use!

Another great thing is that you don’t need an appointment to see a pharmacist, and if they don’t know the answer or can’t help then you haven’t lost much! So if you have possible side effects from a treatment, or low grade symptoms go and see them. It’s also important to make sure you engage with them – let them know what your diagnosis is so they can keep an eye out for inappropriate prescriptions (they’ll note it down, they don’t remember everyone…). Dispensing assistants can be great too – one told me about the NHS pre-payment certificate which saved me loads of money when I had my internal pouch and wasn’t entitled to free prescriptions.


If you have IBD then you will need access to a consultant sometimes. Gastroenteroligists will put a treatment plan in place and any monitoring such as regular blood tests. However, you might not see them very often and get your prescriptions repated by your GP. It can be frustrating if your GP doesn’t know the answers to your queries to not have a direct line to your consultant. Some do give out numbers, or you can call secretaries and leave a message, or ask your GP to write a letter.

Surgeons come into play here too sometimes, and you’ll be introduced to them either as an in-patient or when your GI thinks it is time to see them. They may also put other things in place and take over your care (I’ve been under the care of surgeons for most of my time as an IBD patient).

Specialist Nurses

Specialist IBD Nurses, stoma and internal pouch specialist nurses are often our first port of call when things are not as we would like. However it is estimated by Crohn’s and Colitis UK that 1 in 3 patients don’t have access to an IBD Nurse.

If you have access there is often a phone line where you can leave a message and get a call back, although how long this takes seems to vary. IBD Nurses are often involved in the monitoring and arrangement of biologic treatments, and will also have clinics to offer support.

Crohn’s & Colitis UK have a campaign to raise awareness of the gaps in this service.

You’ll need to find out what is acceptable locally, but they are not the people to call for appointment queries!

If you have a stoma, as well as your local stoma care nurses, your ostomy supply delivery company may have nurses you can speak to over the phone, and some of them support the nurses in some areas.

So we have a whole range of treatment options available to us for when we have questions, and when things are not goign so well – but that doesn’t mean we have to go straight to A&E.

2017 is here…

So we are into 2017 now. In fact it is nearly a year since my surgery to remove my failed internal pouch, rectum and anus. And my wound has still not healed. I saw the surgeon just before the new year, and am being referred to a plastic surgeon to see if something can be done. Since then it seems to have started healing a bit better, so who knows!

I was thinking about 2016 for me and my IBD. 4 hospital admissions (2 planned, 2 not) and over 200 dressing change appointments. I’ve had it dressed in England, Wales and Northern Ireland, mostly 7 days a week. It has been hugely disruptive, albeit that most of the time it has not been painful. Plans have been cancelled, or not made on the first place.

And although now I don’t have any large bowel left to become inflammed – so some people would say I am cured – I could still have a recurrance of extra -intestinal symptoms like the arthritis I’ve had before, and of course the IBD favourite – fatigue.

It’s hard to know with a full time job and a two year old to run after why I’m tired sometimes. Is it just life, or is it IBD? Right now. my body is also trying to heal the wound cavity which takes extra energy too. And that make sit very easy to do nothing else. Exercise is tricky with a wound, but seeing friends, hitting the spoken word scene or even just going out for a walk all have taken too much of a back seat in the last 12 months.

That also means the blog doesn’t get as much attention as it should, and I’ve been thinking about that. I’ve just given it a new look (let me know what you think) but there are some great IBD blogs out there, so I need to think about what I bring to the party.

Anyway, it’s getting late. I still need to plan #IBDHour for Thursday and write a rant about the NHS… Have a good rest of weekend.

A sudden flurry of activity

Well today was a busy day, both with work (OfSTED are coming!) and also with medical stuff! I had a GP appointment to review my test results and unsurprisingly my inflammatory markers were all raised. Also raised was my Faecal calprotectin – which surprised me as my stool does not pass through the inflamed bit (or so I though) – but I’m not sure of that makes a difference. So a referral to rheumatology was made, and some extra pain killers and steroids prescribed.

I’d also tried again to reach the hospital, and spoke to really helpful and sympathetic consultant’s secretary, who undertook to speak with a consultant and get back to me.

When I got back from the GP, there was a letter from the hospital with an appointment for the IBD clinic at the end of July. The secretary then rang back, and said that the consultant wants to see me sooner, so in the morning I’m off to the surgical assessment unit – I’ll keep you updated.

I Love the NHS

Last Monday I had a pouchoscopy – an examination of my ileo-anal pouch by a camera inserted where the sun doesn’t shine. All was fine after, apart from a slightly bloated feeling as they have to put air in to see what they are about.

One of the known risks of the procedure is bleeding, particularly if they take biopsies – which they did. And I had a small amount of bleeding. Until yesterday. Yesterday I had what looked like a lot. There are photos, but I’ll need to find a way of posting them so people don’t have to look if they don’t want to. I felt fine (and still do).

This morning nothing had changed. So I called the out of hours GP, who made an appointment for me to be seen at Chippenham minor injuries unit. The doctor there arranged for me to be admitted to Bristol Royal Infirmary where I had the original test. Off we trotted to the surgical admissions ward where we seen by a nurse, a doctor then admitted. Registrar followed. Fluids were sent for, results chased. All on a Sunday. They apologised when I could not be scoped on a Sunday, but would hold me overnight for observations. Food was found when it was clear no procedures would happen that day – including the amazing Cheeseslaw sandwich.

All free at point of access. Would it be better run by Virgin? I doubt it. Let’s keep the NHS public shall we Dave. Thanks.

#oneaday, Day 74, Hospitals

So today I had an appointment to see a new conultant at a new hospital as I have moved house. I picked the Bristol Royal Infirmary when I was given the choice a few motbhs ago, and it was only in the last few days I realised a few things about my impending visit:

1) I didn’t know where the hospital was.
2) I didn’t know where to park the car
3) I had no idea how much of a factor traffic would be in my journey.

Taking these things into account I read the leaflet they had sent me and set off an hour and a quarter before my appointment to try and park in the Broadmead Centre and use the free shuttle bus. My sat nav seemed to not cope well with this, and after 3 attempts I just followed some signs before finding a car park that would cost me£6.80 for the first hour, followed by one right by the hospital that was full before finding one a few minutes up the road that had both spaces and a reasonable pricing policy.

The BRI is a massive place, but the signage is pretty good, even with buikding works going on. All the staff were friendly and helpful, and I was seen promptly (having been advised there was a delay) and able to make follow up appointments easily and have blood taken without distress or repeated attempts to find a vein.

So, if you do have to go to a hospital, and it’s not an emergency, and you live not to far away, on my experience so far I’d recommend the BRI.