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
- 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 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.