Bowel Disease One Global Family
598 members80 posts

Being a patient is so much more than just taking meds

It has been a while since my last post but that was for good reason. With so much going on I thought that I would take a step back and not post for a while. However the last few weeks as a patient have made me reflect and want to share a few thoughts with you.

I have spent a lot of time talking about my bowel transplant. Talking about my trials and tribulations and the impact on virtually every aspect of my daily life. I am lucky in that I get to go to conferences, speak at events and be an active participant in health care. I am also lucky that I have an incredible medical team that supports me and instead of telling me what I can’t do; they continually find ways to help me do everything I want to do. Despite all of this I have found myself looking at our health service from the outside, peering in as opposed to being in the centre of it all as an insider. What I found is really what has prompted me to pen this post.

You see it is actually quite simple. Our health service is so focused on treating the patient that it has completely forgotten what being a patient actually entails. Let me explain before you look at me perplexed. I continue to get amazing treatment but being a patient is so much more than just being treated. Let me give you three examples:

(1) Two weeks ago I went for a gastroscopy. Biopsies needed to be taken from my transplanted bowel. My appointment was at 8.30am which meant we had to get ready at 6am. We arrived on time. At 8.45am we were told that there was to be a team meeting so things would be delayed. At 10.00am I tweeted to complain that no one had told us why there were delays. At 10.01am a receptionist told us there had been a lengthy case in front of me. (So they do read my tweets AND I was first on the list, or so I thought) At 10.50am I finally went in. 2 hours 20 minutes late.

(2) Last week I had an appointment to go for blood tests to be included as part of a research study. I had an appointment at 11.30am. We arrived on time and already there was a sign saying the clinic was running 45 mins late. A further half an hour after that I saw my doctor (1hr 15 mins late). He was a great guy, who remembered me. What he didn’t know was why I was seeing him, why I had been referred, what research trial I was talking about and he didn’t have most of my notes. Meanwhile I had already checked with my own team prior to going that I was supposed to be having just bloods.

(3) Following the above meeting I then had a follow up appointment with a different doctor at 3pm. Again we arrived on time. I was greeted with the immortal words. You will be seen by 5pm. Why? Well, I was told, you are part of a multi-disciplinary meeting so don’t worry you will see lots of people and the appointment will be taken up with tests etc. Actually, I was weighed which took about 30 seconds. My height was recorded, about another 20 seconds and I then saw no one else at all until the surgeon, who saw me alone, at 5pm. I saw no team and no other doctor.

Three different appointments, in three different departments with pretty much the same process. Now I am no management consultant but I am a long term patient and if I was allowed on the board of NHS England then I would be saying this.

Being a patient is so much more than the treatment or the drugs. The process of engaging with the NHS is incredibly stressful, has a major impact on my life, my family, my financial well being and there are basic simply things that can be done at absolutely no cost. Yes you heard me ABSOLUTELY NO COST! That would make the system work so much better. So here is my plan.

1. Every single department should have social media feeds. Posts should go up regularly explaining current waiting times at the clinics.

2. Where text numbers are available, patients should be texted to be told an updated status as to how the clinic is running.

3. Reception staff should be compelled to update all waiting patients every 15 minutes as to why there are delays and how long they are likely to be.

4. When an appointment letter is sent out it should include a phone number that can be rung to give patients updated news from the clinics. This would mean patients who have no internet access can find out latest news.

5. If delays are the fault of the hospital, and they do not notify the patients in advance, then parking charges should be reimbursed.

6. Free wifi should be included automatically then we can access online information in the hospital or GP setting.

You will notice a common theme here. It is called communication. Why am I banging on about it, well that is simple? It hard enough being treated, seeing your doctors and taking medicines. But what has been forgotten is that communicating properly is part and parcel of being a patient. Telling us what is happening reduces stress levels, waiting times, and frustrations and makes things so much easier. It is not rocket science but by remembering what it is like to actually be a patient will ensure the very basic front line actions are attended too. This in turn will increase patient satisfaction. Reduce waiting times at a surgery or outpatient clinic and make things run more smoothly.

In an age where digital health and new technology is presented as the Holy Grail. In an age where social media is used in healthcare every second of every day, we have missed a basic trick. Get your comms right and so many other things will flow better.

Now given I haven’t posted for a while I have one more thing to ask. It is a direct question to Information Governance experts. In my GPs surgery, I can sit and hear receptionists talking on the phone to patients and talking about medical issues. On the ward where I visited my Grandma her notes was in a file outside her door where anyone could read them. On another outpatient clinic I attended notes were just left unattended at the nurses station. And finally, today I waited in an outpatient clinic whilst the receptionist checked in other patients. She calmly asked for their date of birthday, read out their addresses for everyone to hear and then asked what the patient had come for. We all heard about the mammogram, collapsed lung and chest xray.

So my question is this. We are incredibly slow to adopt basic technologies such as skype or Social Media for fear or what might be sent out in to the public domain. How is technology any less secure than the system we currently have? Please explain… I am waiting for the email responses.

Usually I like to let you know what the latest is on my health front. To be honest I will save that for the next post. Why? Well for starters you are probably bored by now and secondly I am going through a series of tests the results of which I won’t have for a couple of weeks. I will update you then, it gives me an excuse to post again.

Till next time