Campaigning Mum Teams Up With Irwin Mitchell For World Cerebral Palsy Day

The mother of a 10-year-old boy who suffered catastrophic brain damage after a catalogue of errors at birth, has written a moving account of her daily life to offer advice to other parents learning to cope with the condition for World Cerebral Palsy Day.

Samantha Buck, 43, of Horsham, West Sussex, gave birth to her son Alfie in March 2006 at the Princess Royal Hospital in Haywards Heath but her son was starved of oxygen after staff failed to monitor him sufficiently during labour, or perform an emergency caesarean.

Alfie, was left with cerebral palsy and suffers painful spasms, is reliant on a wheelchair and technology to communicate and needs 24-hour support.

His family, which includes siblings, Jessica, 16, and Lewis, 13, and father, Andrew, 48, and a grounds keeper, have spent years adapting to a life affected by Alfie’s disability and overcoming the many hurdles that come with it.

With the help of medical negligence experts at law firm, Irwin Mitchell, Samantha took her case against Brighton and Sussex University Hospitals NHS Trust to the High Court and, in 2013, was awarded a substantial compensation package to help with Alfie’s growing care costs.

Samantha, a former Purchase Ledger Clerk, and her lawyer, who specialises in birth injury, Jane Weakley, have now teamed up to offer helpful advice to parents struggling to adapt to life with a disabled child.

She said: “Our lives were turned upside down by Alfie’s birth injury. As he gets older we are constantly learning to cope with new challenges. Having no experience of caring for a disabled child was daunting, and I want to use my experience to help raise awareness of the problems we face and help others who in similar situations. 

"Although Alfie’s amazing sense of humour makes it easier, caring for a child with cerebral palsy has to be the toughest job in the world as it is 24/7 and consumes your life.”

Accommodation

"Having a suitable home for a disabled family member makes a huge difference,” said Jane. “The damages Alfie was awarded enabled his family to move to a new home which they were able to tailor to meet Alfie’s needs.”

Samantha added: "We had a specially adapted extension and ceiling hoists fitted throughout the house to help with lifting. Alfie is getting heavier and we need to make sure we don’t injure ourselves. We’ve had all the door ways widened so his chair fits and gates on each room to keep Alfie safe. The access to the house has been made level; we’ve had a lift fitted and have a specialist Hi-LO bath and sling and shower trolleys to keep him nice and clean."

"Technology can play a vital role in the lives of people with disability but it is constantly changing and often comes at a high cost," said Jane. "The regular payments Alfie’s family receive mean they can afford to get him private treatment and gives them access to the latest gadgets on the market which can greatly improve his quality of life."

Samantha added: “Alfie now uses ‘eye gaze technology’ for communication as he can’t speak so it’s been a game changer that allows him to express himself. He also now has a specialist paediatric seating for his wheelchair, which he is able to drive using switches by his head, and rough terrain chair which mean we can get out and do more things as a family.

“I’ve even managed to get a special effects gaming charity to help Alfie and he now has an adapted controller for the Xbox with a head switch which means he can play with his Dad and brothers. “I stay abreast of the new things available by trawling the internet and social media for new inventions and have made dedicated Facebook and Twitter pages to disability related things including the latest equipment.”

Getting out and about

"We can’t just jump in the car and pop to the shops. A trip out depends on Alfie’s health and his low immunity means he is often too ill," said Samantha. "On a good day, we have to plan our route, research shops and accessibility and ensure there are suitable places to change my son. We keep our bags packed with the long list of items we need to care for Alfie, and once we’re ready we use the specially adapted wheelchair van we’ve been able to buy, which has an underfloor lift, to get Alfie in. 

"There are no changing places big enough for Alfie’s custom wheelchair or with benches and hoists in our town or the neighbouring one, so he has to be changed on the floor. 

"This led me to start campaigning for Changing Places to improve disabled toilet facilities. I even got the chance to meet Samantha Cameron at Downing Street. The lack of space means I often have to leave the door open which is degrading for Alfie and can be humiliating for his siblings.

"It is filthy and a health risk given his low immunity so I have started a petition, which has over 37000 supporters."

Encourage your child to have extracurricular activities

"We’ve encouraged Alfie to get involved with some sports. It’s a great way for him to socialise and be active and is a chance for us to meet other parents of other children with similar disabilities. "Alfie enjoys wheelchair table top cricket and Access for All Bikes through a local scheme. It’s worth speaking to your local leisure centre to find out what’s available in your area, I campaigned for the local park to install a wheelchair swing so he can new enjoy that too."

Jane added: "Physical activity improves the quality of life of people with disabilities considerably by helping them to develop independence, social integration and general wellbeing. Sadly, it isn’t always the case that disabled people receive the chance to get involved in physical exercise as access, provision and inclusion in sports for disabled people in the UK are often inconsistent. Disabled people should have the same opportunities as non-disabled people to be active."

School

"In a sense, Alfie was lucky because his intelligence was largely spared and he is a bright boy," said Samantha.

"From four-months-old to age four, Alfie and I went to the Dame Vera Lynn Children’s Charity School, which showed me therapies using conductive education and daily living skills to practice at home and became an invaluable support system for us in the early days. Since then I have become a parent trustee. He now attends a similar school."

Jane said: "If someone has a physical or mental impairment which has a substantial and long-term impact on their ability to carry out ordinary day-to-day activities, there are laws in place to protect them from being discriminated against."

Read more about our work involving cerebral palsy.