Brain Injury: The Long Road To Recovery

Imagine discovering a tumour the size of a cricket ball was growing inside of your head.

Or learning a severe heart attack starved a loved one’s brain of oxygen for so long they could only live with mental difficulties.

Two Sussex women gave candid accounts of how these incidents affected their lives.

Their tales opened the eyes of the 200-strong audience of health experts and other professionals to the untold suffering at a conference about brain injury.

In its second year, the event Brain Injury: The Long Road to Recovery, has become an annual event, attracting health experts, researchers and academics in the field and other speakers from across the country.

The event took place at the Amex Stadium in Brighton in aid of Newick-based support charity Headway Hurstwood Park.

Baroness Julia Cumberlege, a former junior health minister and chairman of the Brighton Health Authority and South West Thames Regional Health Authority, led the conference and said: “The journey is long and treacherous for many but could be made easier by those who help.”

Martine Chapman, now 41, from Brighton, had been living with a brain injury for a long time but had not realised it.

Aged 13 she suffered with labyrinthitis but it was not until she was 25, while studying teaching at the University of Brighton, when she began to go to the doctor regularly with hearing problems.

She was told she was suffering from stress and was given breathing exercises.

But she later began getting déjà vu frequently and behaved inappropriately at Dorothy Stringer High School, where she got a job as an English teacher.

She said: “I would turn to the class and suddenly think everyone was in a TV show. They thought I was mad.

“I began stalking a colleague who I still work with now. We still don’t look each other in the eye.

“The symptoms are completely gone now but it was all very embarrassing.”

Then she woke up one day and could not see properly. A Boots optician who checked her sight in the Churchill Square store in 2005 broke the news.

She said: “They took me too one side, away from the other patients.

“The optician said I could have a bad eye infection but it was ‘very likely’ I had a brain tumour.

“I was 31, single, I had a good teaching career and I was being told on a Saturday afternoon that I probably had a brain tumour. My life then went from nought to 60 seconds.

“I spent the entire weekend thinking ‘what now’.

“I didn’t have a partner to go home to, my parents were on holiday. I didn’t know what to do. I panicked.”

She met with her GP and said things then happened “very swiftly”. She was treated in the eye hospital and the emergency unit of the Royal Sussex County Hospital within two days of a referral by her doctor.

She said: “All I can say is god bless the NHS. The people who treated me were brilliant, they reduced the size and swelling of the tumour.

“They told me there was something in my head the size of a cricket ball – that was a massive shock, I didn’t realise anything was wrong, not even a little niggle.

“My parents came back from their holiday – without them I don’t know what I would have done.”

It took some time for her to be mentally as well as physically well, Miss Chapman said, and she felt lost after returning home from hospital.

She said: “My head way all over the place. It was like scrambled eggs. I was starting to break down. I didn’t know if I could go back to work.

“I vaguely remembered meeting brain co-ordinator Bob Hope, from Headway, who came to visit me in hospital.

“Initially I thought he was from the church but when I found the card again I realised who he was. He would talk with me, give me advice.

“I would start going to support groups and discovered there were people with similar stories. I think mentally he saved my life.

“He told me I wasn’t alone, that was the most important thing. He told me what to expect, what I would be feeling and what would happen next. There was a lot of anguish and anger – you are still trying to find the person who used to be.

“Having people around you who know your needs is crucial. Friends and family are great but you need someone who has been affected by a brain injury.”

The majority of the tumour was removed but Miss Chapman, who now works in the learning support department, still has to attend regular check-ups to make sure the remaining tissue does not expand or become cancerous.

Although the symptoms have subsided Miss Chapman will have facial palsy and epilepsy for the rest of her life.

She said: “It’s one of the biggest things for me. I hate it. I can feel it and I know it’s there.”

Sally Hylands, now 59, from Eastbourne, said until June 2002 she took for granted just how important the brain was, until the night which changed her family’s life forever.

She said: “Clifford was strong, full of life, and always called on for help.

“One night I lost the personality of the man I have loved since I was 16. Our life became a rollercoaster journey when disaster struck.”

She said the Hylands were a “normal” family. They enjoyed show jumping with their two teen agechildren but aged 46 her husband had a heart attack which left him with an acquired brain injury.

He was in a coma for four weeks, in hospital for four months, and received rehabilitation for ten months.

The family saw Mr Hylands go through brain scans, tests and treatment. Mrs Hylands spoke of the struggle of dealing with sometimes negative information from doctors – such as the suggestion she should give consent for him not to be resuscitated if the situation arose.

She said she was at her “lowest point” when she faced “unbelievable pressure” to make tough decisions she was not ready to consider.

At that time she also met Mr Hope whose advice and support, she said, helped her find the strength to return to Mr Hylands’ bedside.

She said she was “elated” when Mr Hylands awoke and remembered his family. In the following months they went through many ups and downs. They helped to teach him to drink, eat, stand, sit and walk again.

She said there were moments, sometimes comic, when she found him under the bed trying to fix a car. He demanded a curry at 6am before falling asleep again.

Mrs Hylands continues to care for her husband who now lives with limited mobility, peripheral sight, and very little short term memory.

Through tears she told the audience: “Now he can have a flash of anger and can sometimes be a little inappropriate. He is not our Clifford, he is another Clifford who sometimes resembles the boy I met at 16 and grew up with.

“But it isn’t him in many ways.

“I’m a carer, not a wife. Clifford is as vulnerable as a small child. I found a strength I didn’t know I had. I want Clifford to have his mind back, I miss him so much.”

Speakers included Dr Catriona Good, a consultant neuroradiologist at the Hurstwood Park Neurological Centre, and an honorary senior lecturer at the Brighton and Sussex Medical School, talked to medical experts about the benefits of different types of brain mapping and imaging technology in detecting brain injury and measuring the level of damage caused.

Dr Jonathan Andrews, a consultant anaesthetist at the Sussex Major Trauma Centre, and Matthew Kershaw, chief executive of the Bright and Sussex University Hospitals NHS Trust, spoke about their involvement with treating patients and how ongoing improvement and expansion plans at the Royal Sussex County Hospital will help any patients with brain injuries. The next phase of the development, to move and expand treatment wards, will take place from February 2015.

Judge Stuart Farquhar, the nominated judge for the Sussex Court of Protection, and Glen Miles, a solicitor and head of vulnerable people at ASB Law, based in Crawley and across Sussex and Surrey, spoke about how the legal system can be used to care for those who have suffered a brain injury and assist them in making the best decisions as well as helping to make decisions in their best interests.

Michele Fleming, chief executive of Headway, said the charity focuses on the ‘five Rs’ – Rehab, Re-able, Respite, Reassurance, Rediscover - offering free advice, help and information as well as paid-for support groups and other care.

Speaking to The Argus after the event she said: “We have no idea how main brain injuries there have been in Sussex. It is a piece of work we would like to do but we need to fund the research. Part of the problem is how the treatment and symptoms are logged. Someone who is treated for multiple fractures, which could include those in the head, would be logged as that. Some mild brain injuries may never get logged at all.”

What is Headway Hurstwood Park?

Headway Hurstwood Park treats, on average 80 new patients a year in Sussex, including Brighton and Hove, in addition to those they are in contact with on a long term basis. There is an average of 120 people with acquired brain injuries accessing Headway services in Newick, Brighton and through the outreach services, at any one time and 50 carers who regularly attend support groups. A case is never closed unless a person dies or moves, she said.

Visit headway-hp.org.uk, email info@headway-hp.co.uk or call 01825 724323 for information.

There is also a West Sussex branch of the charity, based in Littlehampton.