Narratives & Stories

Matt's story

The following article appears with the permission of David, Matthew’s father. It was first published in the Autumn 2005 Issue of Contact magazine which is published quarterly by UKCCSG. Links to both UKCCSG and MATTDOTCOM appear on this site. Back issues of Contact can be read in full online.

The Fight for Matt’s Rights
by David Harding-Price

“There’s good news and bad news. The bad news is Matthew has cancer, the good news is he can choose between three treatment centres.” Listening to the information pouring over us we realised that living with cancer in Lincolnshire was not going to be easy, particularly with Matthew being an active sporty teenager.

The family had grown up in an environment of health discussions – with both parents being nurses we should have been able to battle through. Yet this was not the case. Nothing from our past prepared us for cancer. We were lucky knowing some of the rules and regulations. For most families this is not so and government policy does not work for a terminally ill teenager.

Once over the initial shock we looked for coping mechanisms for the whole family. The physical cancer was something we could do little about but other aspects of life needed addressing such as who would collect the girls from school, who would stay with Matthew when hospitalised, where would petrol money come from to get between home and hospital and how would Matthew negotiate stairs at home?

As a ‘middle class family’ it became apparent that unless we fought we were left to pay for everything. Agencies sometimes saw Matthew as an adult but when it suited them he was a child living with his parents. However, he could not live anywhere else when he was dying. This caused Matthew additional stress, knowing money was tight, made harder because mum stopped working after diagnosis. Almost all the agencies failed to appreciate Matthew’s special needs as a teenager, often not taking action until we cited sections of relevant Acts. One charity offered financial support, then withdrew it because my income, in their opinion, was too much. Matthew’s illness left us around £15,000 in debt, which 15 months after his death we are still paying off.

Advocacy

At a time when as parents we were feeling very weak we needed a network of professional advocacy. Fortunately this came from work colleagues and friends who rallied around. One colleague said: “The only thing I can do is give you possible solutions” in contrast to those services which should have supported us but did so only when we became ‘bolshy’.

Teenage cancer sufferers in rural communities should be able to access comparable levels of service to those in cities. Living in Lincolnshire it’s no good being told of respite care in Kent or a siblings night bowling if it requires a 100 mile round trip for parents. Matthew’s greatest pleasure came from driving. His disabled badge enabled him to live a more normal life. Yet even this took a threatening letter before it was issued.

Clearly teenagers with cancer and their families need a dedicated advocate to oversee their interests, someone to support them through the benefits minefield, mobility, disabled badges, RS1500, and offer a shoulder to cry on.

My wife and I established MATTDOTCOM because teenagers felt that services provided for children failed their needs, especially in education and social interaction. MATTDOTCOM lends laptops to teenagers so they can continue their education, and contact their peers thereby reducing boredom.

Chemo and radiotherapy are only part of the treatment package. Many teenagers will say “It’s the parents who have the cancer, I’m just being a teenager”, so for them the social and psychological elements are the most important.

To lead as normal a life as possible, their social needs require support. In Matthew’s case these involved racing his mobility car, grass boarding, pubbing and travelling the world. Eight days before he died Matthew travelled to Dublin, alone, to meet me at a European Conference. The American doctor, Patch Adams, made the powerful connection between environment and wellness. “Patients beware…laughter is contagious!” comes from the film of the same name. Laughter comes from the actions around you not out of a chemotherapy bag.

MATTDOTCOM www.mattdotcom.org.uk

Teenage Cancer Trust www.teenagecancertrust.org