Date: 05 July 2018
Clinical research within the NHS is no different to any other area of the NHS, in that patients are at the heart of what we do, except for one difference; within research, patients, families and carers selflessly work with us as participants, volunteers and advisors to help the NHS deliver new and improved treatment.
Carer and participant in the EFFIP study within the Mental Health specialty
I was a carer for several years to a family member with a mental health condition. My cousin presented suddenly and no one knew what was wrong with her. No one in the family had any knowledge and some were in total denial. I suffer from depression and picked up it was something to do with mental health but I wasn’t sure what to do so I suggested seeing a doctor and getting help. The diagnosis was schizophrenia and she was sectioned in 2007. Since then, I’ve helped her by looking after her, reminding her to take medication and noticing and acting on erratic behaviour.
Dr Jacqueline Sin got in touch with me for a study called E-support for Families and Friends of Individuals affected by Psychosis (EFFIP). I co-facilitate sessions with Dr Sin and other carers and give my thoughts on how a mental health advice website would help carers. I think a lot of parents blame themselves and in my case, my cousin’s mother almost had a breakdown herself - because of the denial and watching her child suffer without understanding it. At the time she became very very stressed. When it’s your child you definitely feel it in a different way?
Research is a necessity for us to move forward, to help people and to cut down anxieties and stresses and strains. If people would share more we would benefit more. You could be saving someone weeks, months, years of anguish just by sharing that one little thing. Take part in as much research as you can, you don’t know who will benefit, but you know sharing is a must. I recommend it 100%.
Cancer patient, retired midwife, nonclinical but current registered nurse and Patient Research Ambassador for the CRN South London
These days my diary is rarely empty as I am involved, as a patient, in various cancer research projects. These range from an involvement with Bowel Cancer UK to being a member of the National Cancer Research Institute Colorectal Clinical Studies Group. It also includes a local involvement with The Royal Marsden Hospital, the CRN South London, the NIHR Research Design Service and an ethics committee. In late 2005/6 when my cancer was diagnosed and treated my partner had just died and the significance of what was happening to me didn’t really register. This has changed over time and I now face cardiac and gastric issues that could have resulted from that time. Also, several friends and family have had cancer with varying outcomes.
I take part in Patient and Public Involvement (PPI) because I can, but mainly as I want to make a difference to cancer services. I do this by commenting on documents for lay people such as consent forms and participant information sheets, making sure they are user friendly; and by commenting on presentations for lay and professional people. These reflect the good and bad of my own experiences.
Patient and participant in the PISTE trial within the stroke specialty
The stroke happened when I was down at my old workplace. As I got in the lift I had a strange sensation – a lady I knew said “how are you?” and I found I was unable to talk, nothing came out. This lady had just been on a stroke course and her father had had four strokes. She recognised it and took me downstairs. They took me to St George’s, which is a top stroke hospital.
They gave me a drug to try to break up the clot. They could see it was in the left side of my brain. Although I didn’t realise it, I was completely paralysed down my right side. The drug they were using wasn’t working and they had an experimental procedure they said they could use. My husband agreed to the operation. It was a difficult decision and my whole church were praying. They inserted a tube in my groin and said lie very still; they whipped out the clot and immediately I could talk again.
I don’t know if it’s standard practice now. In my case it was remarkably successful and a totally amazing operation. By the end of the day I was getting some movement back in my arm and leg. The following day I could walk and by the Friday I could take a shower and brush my hair. I play the piano and within a week I was reasonably competent at doing that again. After a major stroke!
Whose son was a participant in the CAP-IT study within the Children specialty
When my baby son was taken ill with breathing problems and pneumonia for the fourth time in a few weeks, like any other mother, I wanted to get the best treatment for him. So I was surprised when our hospital consultant said that there was no consensus on how much antibiotic he needed and how long he should take it for. I was really happy to help find out the answer to this question by taking part in the CAP-IT study at the Evelina Children's Hospital. My little boy was given three days of antibiotic to make sure he had a safe amount of treatment, and then a trial drug, which may have been more antibiotic or a placebo. I was a bit worried when he continued to get worse, but my GP worked with the research team to make sure he got the right treatment and really close monitoring.
It was actually a relief to be part of the trial and to have such close attention from the research team, as they kept a really close eye on him and were able to refer me straight back to the consultant when they had any concerns about his recovery. The research team were all really lovely and helpful and made taking part in the research really straightforward for us both. It feels really good to know all the information the trial team captured will help other children get the best treatment in the future.
Working for the NIHR, I understand the importance of NHS research but as a mother, I had to make sure that it would be in my son’s interests too. There were a few extra tests involved and also the uncertainty about whether he was given an active antibiotic or a placebo during the later stages of the trial. But I balanced that against the extra monitoring he would receive, the extra time with the research nurses and the knowledge that he could help other children in the future, and I’m really glad he took part.
Patient and participant in a cancer study
I was diagnosed with Bone Marrow Cancer Chronic Myeloid Leukaemia (CML) in January 2007. Initially I responded well to the drug Glivec, reducing my cancer from 100% mutated white blood cells to below 16%. Glivec is a wonderful drug that has transformed CML into a treatable cancer. My cancer stopped responding. It doubled, then, doubled again. I was offered to join a drug trial that was recruiting 100 patients across Europe. The new drug, Dasatinib, worked very well and my readings went down to 1% of when diagnosed.
I had a very positive experience, with a specialist nurse keeping very thorough records of my cancer and me. However, the trial was halted because not enough volunteers could be found in the rest of Europe. I became a founder member of South East London Cancer Research Panel. I have now been a panel member for over 10 years and was chair for a year. I am also a Patient and Public Involvement (PPI) trainer working for the NIHR Biomedical Research Centre (BRC) at Guy’s and St Thomas’ and King’s College London. I present with another patient a workshop explaining how researchers can involve patients in their research. I also sit on the PPIAG (Patient & Public Involvement Advisory Group) every month. Who’d have thought getting Cancer and joining a drug trial was a career move?
Patient and participant in the PHOENIX study within the Reproductive Health and Childbirth specialty
During pregnancy I went into triage because I was swollen and had high blood pressure. It wasn’t very nice being swollen. Gerry, the research midwife, gave me the leaflets for me and my partner to read through. She said they’d been researching pre-eclampsia for so long and they didn’t know what causes it. She said it would be nice and help others to find out a cause. I could only be involved from a certain number of weeks and as soon as I was eligible, I went through it.
It was brilliant as I was going in a couple of times a week and the research midwife would see me. It felt like if anything did go wrong then they’d know straight away and help me. If I wasn’t going in, I wouldn’t have been seen as often and, as I was only going into triage on the programme, that felt better. I was induced and delivered four weeks before my due date but my son, Lozenzo, was fine. His blood pressure kept stable throughout. It’s around 12 weeks since the birth and my blood pressure has come down and I’m off my medication.
I would recommend taking part in research to others as it gives you more information and puts your mind at ease. You can get stressed during pregnancy, and it was really good to know a lot of research was being done behind the scenes on making sure pregnant women receive good care.
Patient and particpant in a diabetes study
I was invited to participate in a clinical trial during a routine clinical outpatient appointment related to my Type 1 diabetes. Having read the Patient Information Sheet and having had all my questions answered, the research physician asked me to sign the consent form and then reviewed my medical history as part of final eligibility checks. That conversation has been life changing for my health because as a result of that researcher checking my medical history as part of that research study, she spoke with my care team who then undertook further blood tests that confirmed I had a rare form of diabetes.
The result: • The Trust delivered structured education and so my increased knowledge about this type of Diabetes has improved how I manage my condition • My overall health has been positively impacted because my blood sugars are better controlled • I know my risk of long term complications are reduced
In the long term this means a low risk of developing complications but, just as importantly, in my role as a Research Delivery Manager, I can personally attest to how joining a research trial can make massive differences to quality of life and improve treatments for participants.
Patient and particpant in the EVOTION project with the Ear, Nose and Throat specialty
I have been deaf since my teens and, having worked with deaf children and adults as students, I know the barriers deaf people of all ages have to face daily. I therefore felt very lucky to have spotted an article on Evotion. I put my name forward in the hope that I would be allowed to participate. I have worn quite a range of digital aids. These have enabled me to live a relatively normal life and pursue my career in education, by giving me access to the hearing world.
Now though, as one of the participants in this study I have been given ‘state of the art’ smart hearing aids which are tailored individually to my hearing loss. I have also been given a smart phone with an app. This allows me to control the hearing aids through four different settings according to which environment I find myself in. During each day this phone is my constant companion, along with the aids; tucked away in my bag or pocket, to be brought out instantly should I need to adapt to a new environment. A hearing person would do this in an instant, without thinking.
The Evotion project is the first of its kind and I’m really curious to know what the outcomes will be. The research will give an opportunity to benefit all hearing impaired adults and children now, but also the potential 20% of the population who are likely to become deaf in the future. A daunting thought I know, but this work is pioneering?
Patient and participant in the RADAR study within the Renal specialty
Taking part in research helps me meet other patients in a similar position to myself. For example, there’s a core group of six of us who are like ‘my team’ because we all have dialysis together on Monday, Wednesday and Friday every week and we have built up a rapport. We all check up on each other and encourage one another. It’s almost like a pastoral care environment in dialysis and even in the waiting room.
The treatment that I receive when I’m on the study is great. When my blood tests are done, they get uploaded overnight and then I can view them myself the next morning through an online app called Patient View, which is quite handy. If I go to a different GP they like to take a blood test, but actually they can just log on to my results to see the trend. That’s valuable because seeing the trend gives a better idea of my situation than a single test. It’s all about educating yourself and having that access to my results allows me to educate myself about my condition, which makes me feel empowered. I feel like a mini doctor.
With other issues I’ve had my consultant can access my test results via Patient View and already have the remedy for me when I arrive for my consultation. It feels simpler.
Patient and participant in the FLAIR study within the Cancer specialty
I agreed to take part in a clinical trial for my Chronic Lymphocytic Leukemia in 2016 after Dr Lydia Jones, my doctor, told me about it. Dr Jones explained the trial design to me and I was aware that I could stop participation at any time. My treatment involved a monthly infusion of Rituximab for six months and taking three capsules of Ibrutinib daily, with regular blood tests and occasional bone marrow biopsies.
Dr Jones is one of the most admirable doctors I have ever come across and I felt privileged to have been under her care. Tina, the research nurse, has also been readily available and very approachable to answer any questions or concerns, as well as organising any additional tests and questionnaires. The monthly infusions took place in the Haemotology Day Unit of Epsom Hospital and the staff in that unit, from the nurses to the ward clerk, are a credit to the NHS. They made my visits (almost) something to look forward to with their professionalism and humour!
I continue to have regular blood tests at Epsom Hospital and find it impressive and helpful that the results are always available by the time I see the doctor, 30 minutes later. I still take the daily dose of Ibrutinib and have been lucky enough not to have suffered unpleasant side effects. I feel fortunate to be under the care of Epsom & St Helier Hospitals and have enormous respect for everyone who has been involved in my care so far.
Patient and participant in a respiratory disorders study
It is a concept to consider that to achieve medical advancement we must have people who are prepared to give back to our wonderful National Health Service (NHS) by participating in research. My story started seventeen years ago when although I paid into private medical care to receive the most prompt and advanced care the NHS came to the rescue.
Initially my wife inexplicably had a problem while we were in Cuba, and she fell unwell - after many years she was diagnosed with bipolar disorder. After many years of being a carer for my wife, and our NHS providing such great support in giving us the understanding we needed, tragedy struck as my own health had been neglected; I was overweight and struggling. A chest infection tipped me over the edge and I presented myself at the A&E Department and was rushed in with respiratory failure in September 2015. Help was at hand for me in one of London’s top hospitals, The Lane Fox Unit, at St Thomas’ Hospital. I was diagnosed as going into shallow breathing when I went into REM sleep, which means I was poisoning myself by not expelling the CO2 when I took a breath. Here I was first introduced to research when I was interviewed by the research coordinator, and it was a no brainer to take part as I was going to get the best treatment whatever side the coin landed. As part of the study I was given a full MOT by the consultant which included an echocardiogram which was repeated after a year. During my trial I was allocated to the Philips Respironics A40, it is a bi-level ventilator that is so advanced that it can do the job of the consultant. The hardest part of using a bi-level ventilator is the masks, I was given so many to try! I even made a film promoting awareness of clinical trials whilst I was on the unit.
I was so pleased with my treatment that I continued onto other research studies and clinical trials. I have now taken part in numerous studies. In London, we are blessed with the best research hospitals, particularly in Guy’s and St Thomas’ NHS Foundation Trust. I sit on the respiratory research panel which is close to my heart. I find it most interesting as it involves thinking outside of the box, thinking as a layman and not as a specialist and giving my input. I have also been mentor trained by the NHS and been involved with supporting drives to promote research. I now also sit on the panel at the NIHR Guy’s and St Thomas’ Biomedical Research Centre, which makes sure that patient panels are fit for purpose, which is all interesting stuff. Why do I do it? Why did I get involved in research? Thanks to the NHS I have lost 50KG in 18 months. We are all so well looked after. Thank you NHS!
Patient and participant in the CRiB study within the Mental Health specialty
The premise of the CRiB study was intriguing as it differed to any approach to treating bipolar disorder I had encountered previously and it appealed because it does not involve medical treatment. Managing bipolar disorder without medication has been a process of much trial and error and a perpetual work in progress, as with each significant peak or trough, the need for new strategies and tools becomes painfully apparent.
The study offered the potential for adding to the range of ways I manage my condition. During the sessions, discussions about metacognition and its usefulness in recognising and evaluating one’s own state of functioning provided a lens for the entire process that easily transferred to daily life. Although metacognition has been crucial in learning to monitor my condition, it was not done in quite as conscious a manner and I was not previously able to articulate this as clearly or precisely.
Overall, I gained further insight into how to recognise changes in my thinking/processing and to relate these to my overall balance. As a result of this process my confidence in the choice I made many years ago has grown stronger, and I hope that such treatment becomes more broadly used.
Patient and participant in a cancer study
If you’re familiar with the Peanuts cartoon you’ll know what I mean when I say the WahWah voice - you’re hearing sounds but can’t make out the actual words. This was how it felt when my original oncologist told me my primary cancer had spread and there was nothing new they could offer me.
Luckily for me I have a very stubborn wife who wouldn’t accept this and we eventually found our way to the Royal Marsden, who have partnered with the Institute of Cancer Research on various clinical trials. I started a new drug almost two years ago and my last few scans have been clear of any visible disease. The Royal Marsden team are amazing. They work tirelessly, selflessly to save lives. I literally owe them my life.
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