IBS Network

A patient's wish list for 2014

This is a very personal list for me. A mixture of of my own health wishes and those that I would like to see happen in healthcare. It would be great to hear if any of your views are similar to my own. So here goes.

1. As you would expect for a bowel transplant patient my obvious wish is for my transplanted bowel to stay healthy and no scares with rejection issues. Some of that is probably out of my hands. I generally spend very little time looking at the statistics and data. To be honest they make quite scary reading. So I will follow the mantra of my incredible transplant team and try and live each day to the absolute maximum. (Whilst at the same time keeping them informed of every little unexpected ache and pain)

2. My second wish is that for all those patients coping with long term conditions to have as health a year as they possibly can. I include so many friends in this wish but I also include very close family members. I have had 3 people very close to me undergo really serious health issues in 2013. You know who you are and I hope that 2014 is so much better health wise.

3.2013 was very much the year of the pledge within the NHS. The NHS created a Change Day. My wish for 2014 is that those pledges become real life actions and that as patients we see the real benefits to those pledges. There will be another Change Day in 2014. For me though pledging to change is a great marketing initiative. I want real change.

4.What change do I wish for? Well it is quite simple. My ambition as patient is that no decision that is taken that affects a patient is made without the input of a patient. I wish for a patient to have a seat at the table where every decision is made. That seat to be at the same height and carry the same weight as everyone else around the table.

5. On 1st April Simon Stevens will take over as new the Chief Executive of the NHS is it beyond the realms of possibility to wish that one day there might be a Patient Chief Executive sitting alongside Mr Stevens? So many people claim to represent patients, be the voice of a patient but are we not now at a stage when there are enough patients who can represent themselves? Enough articulate, informed, interactive and strategic patients who deserve to be heard.

6.I wish, in 2014, that the NHS will be brave enough to allow its health care professionals to use social media and digital technologies to engage with patients. Yes there are wonderful professionals working in silos. Take my own surgeon Anil Vaidya and amazing dietician Marion O’Connor who use email, text, skype and social media all the time to engage with their patients. Dr Mark Newbold, the CEO who publishes his own diary for all to see. Simon Brownleader the GP using digital technologies in every day practice. The list is pretty lengthy and I haven’t even touched on patients who push the boundaries in engagement and empowerment to the limits. My hope is that tweetchats such as one of the UKs top weekly forums #nhssm will educate patients and HCPs to use different ways to engage with each other. There are plenty of such chats happening all around the world so is change happening? Will 2014 finally be the year when technology is embraced fully? With millions using their mobile phones on a daily basis, will mhealth finally make a mainstream break through? Patients want it but does the healthcare system?

7.I wish that with all the talk of self-management that patients are given the tools to be able to do this properly and without having to guess what the term really means. There are some great resources out there, crowdhealth is one such site. But how do we navigate our way through the quagmire of information? What sites and tools are trustworthy? Can we please turn a health buzzword in to practical examples that can be used in real life?

8.Then there is the next great phrase quoted by so many - remote monitoring. It doesn’t matter which side of the political table you are on or whether you work in health care or are a service user. You don’t need to be a genius to work out that health systems, especially the NHS will go bust unless we work out different ways to engage with patients. Yes remote monitoring is key. However whilst we get medical futurists, industry professors, mobile health gurus telling us what is coming next we haven’t even started to embrace using existing technology for remote monitoring. My own transplant team had to do skype consultations outside of work as they were not allowed to engage with patients in this way. How many of you liaise with your doctors via email or text let alone skype? I suspect not many. I believe I am one of the lucky ones. So whilst the devices market goes in to stratosphere on the ground we haven’t even embraced what we use in our daily lives now.

So wish number 8 is simple – skype clinics should be rolled out in both primary and secondary care. Why not? Answers on a postcard please and don’t say privacy when it is just as hard to hack a skype account as it is a hospital computer system. Don’t say consent because patients obviously have to consent to do these clinics.

9.I wish that peer to peer interactivity will be perceived as an essential part of healthcare. Whether it be twitter, facebook, blogs or on websites patients can gain a huge amount from other patients. You all know I spend a ridiculous amount of time on social media but the facts speak for themselves. 4 patients have had life changing bowel transplants as a result of my blog. Over 20,000 patients are now connected on groups I have been involved in and I am a nobody compared to most of you guys. My wish is simple. Will healthcare professionals and hospital managers embrace peer to peer and use of social media in the way that patients do?

10. Let me talk healthcare conferences. My wish is that all conferences about any aspect of healthcare are “Patient Included” conferences. A brilliant blog post by Lucien Engelen highlighted this point in 2012. My wish is for all conferences to follow the lead of Doctors 2.0 & You and Stanford’s Medicine X and ensure that a percentage of the delegates AND participants are patients.

11. I have to finish with a personal wish. This year sees the launch of my health technology company 11health. Our product is the first ever sensor device for ostomy/stoma patients and is called the Ostom-i™ Alert Sensor. I just hope that this product helps to improve the lives of patients coping with ostomies. Oh and if I can make a few quid that would be lovely too!

The irony is that as I launch the product, (that was invented by myself whilst in hospital recovering from transplant) it is proving easier to sell internationally that it is to the NHS. I hope that patients who innovate get the support and help they deserve. I hope and wish that the NHS Innovation Centre will focus on patients who wish to make the transition to patient entrepreneurs. There is huge shift towards patients as leaders. Companies such as CPL are creating ground breaking programmes for patients and 3rd party organisations. Will the same apply to encouraging patients to innovate?

So my wish list is over. How much of this will happen I have no idea. Taking it all right back to the beginning my ultimate wish is simply for better health and happiness to all those patients who face issues every single day of their lives.

Till next time

M x

1 Reply

Hi Michael.

I have never understood fully why my doctor cannot communicate by E mail .equally I fail to understand why consultants I have seen are recording a consultation into a dictaphone as I leave and then I may or may not get a copy of a letter listing the symptoms and any diagnosis sometimes a couple of months later or never .

Equally why do we not hold our medical notes personally as is my experience of living in mainland Europe ,where x Rays and test results are routinely handed to the patient to have to hand for any follow up .Why is it that on the numerous occasions I have seen various medics the first question is invariably ."now tell me mr..........what has bought you to see me today ?"I am afraid my standard response is now "well doctor I see that you have in front of you what looks like my medical history so it might help you to understand why I am here if I withdraw for a few minits to give you the opportunity to acquaint yourself with it " This is often not well received but I am fed up with endlessly having to go over the same old ground again and again repeating what is already in my records . consultation time is precious so resent wasting it when a little preparation on the part of the medic would lead to a more constructive dialogue .

In the last months a hypotension clinic I have attended for years has made a giant leap forward by texting appointment reminders . So a way to go then !


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