Tag: research

The power of patients, five ways.

Our clinical work is about patients. In each consultation, we are a team of two, doctor and patient, collaborating on the solution to their clinical problem. Our services are organised to make best use of our clinical resources within the practice, the skills of our team members and the consulting space we are allocated.

However, our services could also be organised to make better use of the resources that patients bring with them. At the start of 2020, I am reflecting on five main areas where our patients have shown how they can shape the provision of health care. In 2019, our patients helped as research subjects, campaigned for new services, got involved in consultation and service design, helped to teach the next generation of doctors, and used their stories to help others access care.

Please note that I have got the permission of any patients mentioned in this article, and their contributions to health care are already in the public domain. Bear in mind that our practice only has 2,300 patients on average; for a small practice this is a high level of participation.

TEACHING

I’d like to thank all of our patients who have helped to teach the next generation of general practitioners. During the year, you have talked to school pupils, undergraduates, broad-based trainees and General Practice trainees, all of whom wanted to find out about the delivery of medical care in remote and rural areas. You have treated them with kindness and respect, and trusted them.

SERVICE DESIGN

This year, we have been extending the use of a program called ‘Attend Anywhere’ which allows patients to be seen on a videolink. We haven’t yet fully realised the possibilities of the software, but we have supported patients to access clinics on the mainland when they have been too unwell to travel. Several patients have collaborated in writing an information leaflet to support this. Even better would be a short video that we could play to patients; watch this space.

PARTICIPATING IN CLINICAL TRIALS

David wrote his own account of participating in a stent trial, and has provided evidence of his improved health; a photo from the top of Ben Mor. His own account is too long to be part of this article, so I’ve given him is own page. He participated in the October trial at the Golden Jubilee – and they wrote about him as well – here.

David and son, On top of the world.

He makes an important point at the end of his blog; his gratitude for good medical care was part of his motivation for participating in the trial. We all gain, our practice, our secondary care colleagues, and all of those patients who benefit from the advancement of clinical science.

HEALTH PROMOTION

On the 2nd November 2017, Shona received the devastating news she had been diagnosed with breast cancer.  On the 12th July 2018, she celebrated with her family and friends on completing her treatment. On the 1st October 2019, she shared her story online, to highlight to others the importance of checking their breasts and seeking help.

We are all influenced strongly by stories, especially when they are told by people like ourselves, people that we know and people that we trust. Shona has told her story to help others, and to support two campaigns; breast cancer awareness month, and the Scottish ‘get checked early‘ campaign.

CAMPAIGNING

SCAD, Spontaneous Coronary Artery Dissection, is a rare cause of heart attacks. It particularly affects women, and is not related to cholesterol, smoking or any of the usual risk factors. We have two patients in our practice who have been affected, and they have both been campaigning for better services in Scotland for patients with this condition.

One of our patients, Mary, has been one of the founder members of the Beat SCAD Scottish Patient Group. She has been travelling down to Glenfield Hospital in Leicester for specialist advice and follow-up after her SCAD heart attack; a long trip if your health is not the best. The Leicester clinic is currently only one of two in the UK specialising in the care of SCAD patients, and the patients support each other. The other clinic is in London.

With the aim of improving health care for Scottish patients with SCAD, Mary has represented the group and worked to raise their profile at clinical conferences and events up and down Scotland. The Scottish group aims to increase awareness of SCAD in Scotland, and is lobbying for a Scottish SCAD clinic, the development of guidance for managing SCAD in our national SIGN guidelines, as well as a national care pathway.

If you want to read more about the campaign, follow @mary_galb and @beatscaduk on Twitter.

These are just the stories I know about from 2019. I’m sure there are many more patients contributing to our National Health Service, teaching our clinicians, developing new services, participating in research trials, supporting other patients, and helping us to see what is important to them.

A patient writes about participating in a clinical trial.

I was extremely fortunate that a chance comment about breathlessness to my GP following a walk up North Lee, quickly lead to some tests and a consultation with consultant cardiologist Dr. Stuart Watkins at the Golden Jubilee Hospital in Glasgow.

After a preliminary scan, I was diagnosed with restricted coronary arteries and required three stents, two of which were joined at a ‘Y’ shaped branch. This is a slightly more complicated procedure, and whilst he was explaining this to me, Dr. Watkins said that my case might be suitable to be included in a medical trial called ‘October’.

One’s first reaction when you have had a relatively serious medical diagnosis is that you just want to have the normal procedure as soon as possible and, in truth, the idea of being part of what sounds like a medical experiment is difficult to contemplate.  However, on a closer read through the information, and discussions with both my GP in person, and Dr. Watkins by phone, it was clear that the trial was not about a new type of stent or a new method of inserting them, but a different way of imaging the procedure as it was under way.  This new technology is believed to be particularly helpful in more complex Y branch stent procedures.  Thus reassured, I agreed to take part. 

When I arrived on the ward it felt a bit like being treated as a VIP.  Not only did I have all the normal high quality care and attention one would expect from the nursing staff, but I had a second nursing team working on the trial looking after me too!  The senior trial nurse explained to me that I was the first patient to be on the October trial at the Golden Jubilee, although many other patients had been involved in other similar trials using the new imaging technology all over the world.  Also that the trial was ‘randomised’, with patients being selected by a computer programme when the procedure was already under way.

Catheter labs are very busy high tech places with what seems to the patient to be masses of staff and equipment, and the trial adds to both staff and equipment so makes it even busier.  As the moment approached for the new imaging equipment to be turned on, the trial nurse started the randomising computer programme running, and a few seconds later she announced that I hadn’t been selected!  So my procedure was then finished in the normal way.  As soon as it was completed, Dr Watkins reassured me that because the arteries were at the front of my heart they were easily visible using the standard imaging technique anyway, and that he was very pleased with the results.

Afterwards, as I was patient ‘no 1’ on the trial, Dr Watkins and the senior trial nurse came to the ward and we had our photo taken for the hospital magazine.  The trial nurse contacts me every few months to check I’m OK and will do so yearly for the next 10 years.

My recovery was incredibly quick.  I was able to start taking short walks after a few days of taking it easy and headed up Rueval after around 6 weeks – accompanied by my District Nurse sister.  Then in the summer I walked up Eaval with our younger son Joe, feeling absolutely back to normal in terms of fitness.  Now I walk our dog twice a day for an hour and also go swimming once a week.

My recovery has been monitored by the Uist Cardiac Nurse and I’m just about to attend my final clinic.  She says I’m a model patient, but I take a different view.  In the Golden Jubilee ward I was surrounded by patients who had suffered much more serious cardiac problems, so I feel I’ve been incredibly fortunate to live on Uist and experience such fantastic medical care which has allowed me to return to my normal life.  I will always be grateful for this, and participating in the ‘October’ trial and hopefully benefiting medical science in a small way in the process, is as good a way as any of saying thank you.

At the top of Eaval in North Uist