Suffolk mum’s campaign to get son access to healthcare services

When the son of Shantal Chavvi with cerebral paralysis lost access to medical services at the age of 18, she had no idea that she would fight four years to change this.

In childhood, 22-year-old Harry Chavervi of Brandon, Suffolk, was diagnosed with epilepsy and cerebral paralysis, a state that affects movement and coordination.

Throughout his time, Harry’s specialized school, which is non-verbal, enjoyed access to hydrotherapy form of physiotherapy, including physical exercises in a warm pool, which helps with movement.

But when he left the school, his mother tried his best to force him to gain access through NHS and believed without her, his life would be limited.

The 65 -year -year -old, the chervy said that the last few years have been a “hell”, and she called for answers.

M -Chauervi explained that Harry had two liver transplants when he was only 16 and 18 weeks, but both failed, which led to organ failure and damage to the brain before he was diagnosed with cerebral paralysis.

She said that, despite this, he was always “joy”, and in childhood he loved to play football.

“No one could stop him from running,” she explained.

“I have a very vivid image of a teacher trying to control him on the day of sports, holding him at his short place, because he just wanted to run.

“He was a joy, and he is still. However, it suddenly changed. ”

M -Jever said without hydrotherapy, Harry “completely lost the use of his legs”, which means that when he wants to move, he must either be shut to his knees, or he must use a wheelchair.

She said that he was in “constant” pain, his epilepsy worsened, he was at risk of sudden unexpected death during epilepsy, and he tried his best to chew food, sometimes leading to thoughtful.

M -More Chavervi said that Harry is also suffering from depression.

MS Chaervy has applied for NHS ongoing healthcare This could finance Harry's concern, but she was told that he had no right.

She then applied for two exceptional financing requests to get his access to hydrotherapy, but they were also denied.

Earlier this year, she submitted an application for the third time and was still waiting to hear.

This happens, despite the fact that doctors and physiotherapists recommend Harry for hydrotherapy, one of them stated in a letter that this “may well be more than any change in the drugs that I can do.”

M -Chaurewh said that access to hydrotherapy would mean “everything” for Harry, and she believed that she could help only half an hour a week.

Heiser EPPS, physiotherapist with experience in hydrotherapy of patients with cerebral paralysis, said that she could “improve the quality of life” thanks to the advantages that it had as a result of a decrease in pain and its ability to improve muscle function.

“One of the reasons for which you feel pain is that your muscles face your bones, attracting them into abnormal positions, so your pose is not great, and then because your pose is not great, it becomes a slightly vicious cycle,” she explained.

“You cannot ride and move like you or me to relieve this pressure and reduce this discomfort.

“While as soon as you are in the pool, you can take these movements because you do not have such an increase in spasticity and rigidity in your muscles that you have when you get out of the water.”

Emma Livingston is the founder and chief executive director of the Charity UP – the movement of adult cerebral paralysis.

She said that access to medical services for adults with cerebral paralysis, of which there are about 130,000 people in the UK, was a serious problem, and she herself fought.

“We are a comparable size of multiple sclerosis and parkinson, and yet our visibility and services that we receive largely,” she said.

She said that the problem stems from the fact that, until recently, the condition was not recognized as long-term, as well as the fact that “not a single professional who coordinates care” for patients with cerebral paralysis, due to many types of cerebral paralysis.

M -Chaueri wants answers to why there is no clear NHS structure for adults with cerebral paralysis.

“How it turns out that they need care of their whole young life when they get older,” she asked.

“They are suddenly cured, because if they are, please tell me, this will make my life better.

“This is a complete farce. The time has come when NHS realizes that adult patients with cerebral paralysis with very difficult situations suffering from chronic pain every hour. ”

The press secretary of the NHS Suffolk and the North -Eastern Essential Council for Care for the Essex said that all applications for exclusive financing were considered by a group of medical workers, “with an accent for the clinical needs of the patient.”

“Where the application is not successful, the appeal process opens up for everyone,” they added.

“We would be very happy to speak directly with the patient’s family to explain the situation.”

The representative of the Ministry of Health and Social Assistance added that “it is committed to ensure that people living with cerebral paralysis receive proper support throughout their lives.”

“We expect NHS England will work with children, young people, families and guardians to provide high-quality services, such as hydrotherapy, for people, when they go into adult services,” they said.