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Patient story: Local stroke patient shares story to promote NHS research

A Chichester man who was treated in Southampton after suffering a rare form of stroke has spoken of the importance of continued research into the causes and treatment of the condition.  

In December 2016, 60-year-old David Higenbottam, suffered a subarachnoid haemorrhage, an uncommon type of stroke affecting around 6,000 people in England each year.

Since his stroke, David, has undergone an intense period of recovery in order to return to normal life, including returning to work as a Research Delivery Manager for the National Institute for Health Research (NIHR). He now hopes that by sharing his story, he can highlight the importance of advances in medical research supported by NIHR to improve outcomes for others. 

It was just a few days before Christmas 2016 when David first started to feel unwell:

“Without warning, I started vomiting and was unable to get up. No drooping or slurred speech, I just felt really tired. I soon became very confused, developed eye pain and unclear vision,” explains David, who is married with two children. 

“An ambulance arrived and I was transferred to St Richard’s Hospital where I was taken into resuscitation. I was no longer able to move my limbs at this point and was now incoherent. After a scan, my family were told that I’d suffered a catastrophic bleed in my brain and must be transferred to Southampton General Hospital (SGH) immediately – our nearest major trauma centre.”

“When I arrived at the Wessex Neurological Centre at SGH, my family were told that I needed an operation to stop the bleeding in my brain. The operation went as planned although I was to suffer very high blood pressure and an infection over the next couple of days which meant I had to remain in the Intensive Care Unit.”

A serious and sometimes fatal condition, subarachnoid haemorrhages are most often caused by brain aneurysms which are bleeds on the surface of the brain. It is not currently known why brain aneurysms develop in some people, although risk factors like high blood pressure have been identified.

Accounting for around one in every 20 strokes in the UK, a subarachnoid haemorrhage is a life changing condition for patients. Whilst the outlook has improved in the last few decades, patients who survive can be left with long-term problems like extreme tiredness and headaches.

“After a long period of rehabilitation, six months to the day of the bleed, I returned to work on a phased basis following both cognitive and physical rehabilitation,” David explains.

“What I have discovered is, chiefly, that people are important.  A personal support team of family, friends and work colleagues working with my medical team has been essential.

“Physically, I’ve been repaired however there are challenges associated with cognition and subtle changes in behaviour which myself and my family have noted following my hospitalisation. These include cognitive fatigue, which can be extremely frustrating, and contributes, at times, to a lack of self-motivation to take on everyday tasks. However, I have the support of my family who, as well as providing encouragement, are also there to motivate me.

“What is clear to me is that without the advances made in clinical practice because of medical research I would not be in a position to share my story. Whilst I was not eligible for one of the trials running at the hospital because of the additional complications of my condition, I encourage others to find out if they may be eligible for a research study.”

Dr Christopher Kipps, a Consultant Neurologist at University Hospital Southampton NHS Foundation Trust (UHS) and a local NIHR Neurology Specialty Lead said:

"The Wessex Neurological Centre at UHS is very active in neurosciences research, and there is a major neurosurgical focus on brain haemorrhages. I’m sure this contributed to the excellent care that David received. In my experience, great care and great research walk hand-in-hand." 

Across the UK during 2017/18, the NIHR recruited to over 100 studies within the stroke specialty, in order to improve the outcomes and care for stroke patients like David.

Alongside his team, Mr Diederik Bulters, a Consultant Neurosurgeon at UHS, has been assessing the effect of an experimental drug on patients who have received treatment for a subarachnoid haemorrhage. The drug is a synthetic form of a small molecule that occurs naturally in broccoli and is part of a group of chemicals found in plants that are strong antioxidants and can help regulate some of the body's functions.

Mr Bulters explains:

"It is essential we work to improve outcomes for patients who have a subarachnoid haemorrhage as many of those who survive are left disabled and suffer long term cognitive and emotional problems, changing their lives forever. Despite the need, there have been no significant clinical developments since the introduction of nimodipine more than 20 years ago, so we are absolutely delighted to offer patients the opportunity to be involved with this exciting new treatment."

Every year, more than half a million people help improve healthcare and develop life-saving treatments by taking part in research. The National Institute for Health Research (NIHR) works with patients, carers and the public to provide opportunities to get involved in health and care research.

Following International Clinical Trials Day on 20 May, the NIHR’s I Am Research campaign encourages patients to ask their doctor or healthcare professional about local research opportunities.

To find out what research studies are taking place locally, visit the UK Clinical Trials Gateway at www.ukctg.nihr.ac.uk/