Making headway into brain injury

HUMOUR is how Keith Pemberton gets through the frustration that comes with his brain injury. As he sits on the sofa in the sitting room of his Stowmarket home he's full of jokes and fun to be with.

James Marston

HUMOUR is how Keith Pemberton gets through the frustration that comes with his brain injury.

As he sits on the sofa in the sitting room of his Stowmarket home he's full of jokes and fun to be with.

But it wasn't always like that.

Back in early 2006 he went to his GP after a series of worrying symptoms left him and his family deeply concerned.

He said: “I worked as a financial advisor. I was walking in a hotel and my boss said to me “Are you ok? You look a bit wobbly.” That was the first sign something was wrong.”

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Within weeks, Keith, now 53, was unable to drive and had all but lost control of his left side. He was also forced to finally give up work in early 2006.

He said: “I found myself driving up a pavement so I knew I had to stop. I had also been sleeping a lot which was very unlike me. That was from November 2005 to January 2006. Over that period things got dramatically worse.”

Referred to a specialist by his GP, it was discovered something was wrong with his cerebellum - part of the brain.

He said: “No one knew at that stage exactly what was wrong. In the March I had an MRI scan. They found a tumour. “It was a slow growing tumour and could have been there for up to ten years. It was on the spine in the head and it was about the size of a fist. The swelling around it was putting pressure on the brain and causing the problems I was experiencing.”

Seriously ill, Keith went to Addenbrooke's Hospital in Cambridge and, after several delays and a bout of pneumonia, he was operated on in April 2006.

He said: “They took away as much as they could.”

It turned out to be cancerous.

Keith's wife Jan, a teacher at Stowmarket High School said Keith had also suffered psychosis due to an overdose of steroids.

She said: “He became somebody else. I didn't sleep for weeks. He was doing bizarre things like trying to book holidays and ordering office stationery.”

By May 2006, Keith was in Ipswich Hospital with an infection and was again seriously ill.

Jan said: “He wasn't eating and it wasn't clear if he would make it. Financially it was appalling. I'm a teacher and was able to take six months off on full pay, my headteacher was very supportive. We had a mortgage and had to pay to travel to hospital everyday. It was very expensive.”

Married since 1977 and with two grown up children, Jan said the period of Keith's illness had been “surreal”.

At the time they were living in a large house in Finningham - they have since sold up and move to a modern property in Shearwater Way, Stowmarket.

She said: “I had noticed deterioration in his health and I knew at the back of my mind things weren't right. When he was ill Keith was very angry with me as I had to stop him doing the strange things he wanted to do. I had to love my husband and also keep the peace. When he was ill in Ipswich Hospital and wanted to give up I was insisting he ate.”

The turning point - where Keith admits he decided he wanted to live - was when their daughter, an actress, visited.

He said: “I wanted to see the show she was in. I knew I had to get better. We are a close family. I don't remember everything that happened and have a big blank of quite a few years before the illness.

“Now my left side is affected. I suffer from a lack of balance and coordination. I have problems with my left eye and control of my movements. I also suffer from a lack of concentration.”

Keith has made huge improvements since the early days of his recovery and is enjoying more independence.

He said: “I've just started driving again. I can go fishing - though not on my own which is frustrating. I am a member of the Suffolk Disabled Angling Federation.”

Jan said: “We used to have holidays abroad and do normal things. Those sort of things have been taken away from us and we don't do some of the things we used to do. I'm still angry about it.

“I have become the breadwinner at a time I might have considered taking it easier and retiring but you adjust and learn to do different things.”

Keith is aware that many people who suffer similar illnesses often don't live beyond five years after diagnosis and he is determined to make the most of his life.

He said: “I want to do as much as possible. I realise how lucky I am to be here and that's what I hang on to.”

According to the results of a survey commissioned by Headway - the brain injury association - brain injury survivors face discrimination and prejudice in society.

The survey, thought to be the first of its kind to explore how people feel about their brain injuries, has revealed disturbing levels of isolation, discrimination and prejudice.

But, of even greater concern is the fact that this discrimination is coming in the form of not only social prejudice, but also a lack of requisite care and attention from health, social care and other statutory agencies.

According to the survey, 60 per cent of those who took part had experienced discrimination from at least one social service, such as health or social care, benefits or employment and more than two thirds of brain injury survivors believe they are discriminated against by society because of their injuries.

Peter McCabe, chief executive of Headway said: “The results of this survey are shocking. We are appalled that so many people with brain injuries are being mistreated by statutory agencies and facing prejudice by wider society.

“Three years ago, the government launched the National Service Framework for Long-term (Neurological) Conditions.

“This framework was designed to transform the way health and social care services support people living with long-term neurological conditions. The results of our survey clearly show that in three years, very little has been achieved and the NSF has to date been a failure.

“Brain injury can have devastating effects, which can often last a lifetime. It can affect every aspect of you: walking, thinking and feeling, and can mean losing the life you once led and the person you once were. People trying to deal with these life-changing conditions need our help and yet they face discrimination and prejudice in their everyday lives. We hear numerous stories of how our service users are often bullied, harassed and ridiculed for their disabilities, which is highly disturbing in a sophisticated society like ours.”

The survey also revealed that almost half of all brain injury survivors in the UK find it difficult to tell people they have a brain injury due to the stigma surrounding it and the prejudice they may face, demonstrating the widespread nature of the discrimination.

Jan said: “I think people see Keith as disabled but they aren't sure what his disability is. With brain injury it is not always obvious what is wrong.”

Jan said she found securing care for Keith as he began to recover and she went back to work was extremely difficult.

She said: “Keith couldn't be left alone and I had to use a variety of organisations and charities to make sure he was cared for.

“I felt there simply wasn't enough support for people in my position. There was no one I could ask how to get the things and the care we needed.”

Jan said she found she would often be the one to explain what Keith needed and wanted to the various agencies she came into contact with.

She added: “We haven't come across a great deal of discrimination but it wasn't until we found out about Headway and got an appointment that someone finally asked Keith what he would like.”

According to Headway, the discrimination faced by people with brain injuries is the result of a lack of understanding. Peter added: “One of the difficulties in raising awareness of brain injury is the fact that it is often very hard to notice that someone has one.

“It is called the hidden disability as many people with brain injuries will appear, on the surface at least, to be perfectly healthy and yet they may well be struggling with the most simple cognitive functions.

“We're using Action for Brain Injury Week to raise awareness of brain injury so that we can start to make a change in the way people living with its effects are treated in society.

“People with brain injuries are already battling with everyday life. We ask people to bear this in mind the next time they meet someone who seems a bit different.”

n If you have been affected by the issues in this feature and would like more information and help contact Headway Ipswich and East Suffolk branch on 01473 704159 and Life Resolutions on 01449 612262.

Have you suffered from brain injury? What was your experience? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN, or send an e-mail to eveningstarletters@evening