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!

GPs

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.

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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.

Pharmacists

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.

Consultants

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.

How are you?

I’m putting together a new poem about what people with IBD or any chronic or invisible illness really mean when they say ‘I’m fine’ in response to the question in the title. If you would like to get involved please comment or message me!

Guest Blog: Creating #IBDHour

A post I wrote for my social media mentor about #IBDHour

naturally social

Towards the end of last year I had to pleasure of being contacted by someone who had an idea, a thought and a passion…but needed to understand how to harness social to deliver it. Richard became a mentoring client of mine and over the course of 4 weeks we looked at goals, channels and approaches. What would be best to get him there; what could be dropped, parked or developed. One of the main things that came out of our initial meeting was the potential (and desire) for Richard to become a thought leader in the IBD / health sector. As a sufferer it was something he had begun blogging about and was actually directing some of his creative aspirations around spoken word poetry and performance.

A great way to position yourself as a thought leader in any sector is to take part in, and (better yet!) establish, twitter hours…

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An open letter to my friends & family

 Hi everyone,

So as you know I had big surgery in January 2016. The wound hasn’t healed, and next week I’m going to see a plastic surgeon about it.

I’ve had over 200 dressings applied, which started in May. Most of the time that has been 7 days a week. It has been very disruptive to my life, to our lives as a family. Catching up with missed work. Being tired from growing a new buttock. 2 further hospital admissions.

And that has meant plans have been cancelled. Sometimes rearranged. Or not made at all. And as it has gone on longer and longer, fewer and fewer plans got made. 

And I’ve tried to be upbeat – no, it doesn’t hurt, yes it’s still going on, ha ha, growing a new bum cheek – but it’s getting harder. Hopefully next week will give me a time frame for getting it sorted.

And so this is an apology for plans cancelled or not made at all, birthday cards that came late, phone calls not made.

And I’m not ready to promise, but there is a hope that it will all be over soon. Then plans can be made, games played, meats BBQd and drinks drunk.

So, please bear with me, it has been a bit limbo-Esque, and there is much I want to do once I no longer have a hole in my bottom.

 

 

 

What to write?

Sometimes I really struggle with what to write about in my blog. As the main focus is about my inflammatory bowel disease and subsequent surgeries, sometimes there are periods when not much is happening, which don’t make for great reading.

Right now for instance, I am still having the wound from my surgery 12 months ago packed daily. I am waiting to see a plastic surgeon to see if anything can be done about that wound. And there is an infection in it so I am taking antibitoics. Other than that, health wise I am OK (I have a bit of a cold but it’s not too bad – I had my flu jab).

My blog has always ben about my journey, so when nothing is happening, it makes the updates harder to do. As such, I don’t have a huge following, and most of my readers are friends who read it via facebook. Of course, if I don’t post regular updates, then I won’t get more readers… so it is a problem.

The other issue is that I am pretty busy. I work full time, and by the time I have come home and got either dinner ready or the toddler to bed, I’m not at my most creative. I have a few ideas, but never seem to have the energy to develop them. It’s hard to know if this lack of energy is IBD related – fatigue is a huge issue – or if it is my body trying to grow a new buttock, or if it is just life in general.

However, it is helpful to me. So I shall continue to try. I’d like to get into video posts (vlogs) but need to get myself an iPhone adaptor for my tripod. And maybe some lights…

What I have discovered recently is there are some great IBD blogs out there, from a range of people at a range of stages in there journey. I’ll put a list together. Maybe reading more of them will help me find my voice…

 

#IBDLove

This sounds like a lovely thing – check it out!

Source: #IBDLove

I’m teaming up with Kathleen from Crohnological Order and author of Go Your Crohn Way for a little #IBDLove. We want to hear your stories when it comes to the special ways people have shown t…

 

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.