A DISABLED man living with muscular dystrophy has warned that London’s lack of specialist care could leave him “fighting for his life”.

Sulaiman Khan, of Spring Gardens, Woodford Green, requires 24-hour care to help him cope with effects of his genetic muscle-wasting condition.

Having muscular dystrophy and scoliosis means he is unable to walk, wash, dress or feed himself, and his weakened immune system makes him extremely vulnerable to chest infections, pneumonia and other illnesses.

Aside from the help of his eight carers, the 31-year-old’s care package only allows him appointments with specialist clinical nurses every six months.

In other parts of the country, NHS trusts employ expert care advisors who can bridge the gaps between those appointments, offering vital practical, mental health and community support.

In the south west of England, there are four expert care advisors for the 6,000 people living with muscle-wasting conditions like Sulaiman’s, three for 6,000 in Yorkshire, and three for 5,000 in the east midlands.

In London there are 9,000 people living with rare complex conditions like Sulaiman’s, but there are no expert care advisors at all.

Sulaiman said: “A care advisor is one person you can go to for anything and everything, who understands your condition and your history.

“Not having one means outside of my clinical appointments, there is no one to help me, which is extremely hard to cope with, as my health can deteriorate rapidly between those visits.

“I’m afraid being so dangerously ill without that specialised care could leave me fighting for my life.”

Sulaiman claims that although his GP can be very helpful, getting an appointment can take up to three days, by which time a chest infection could have left him unable to breathe.

He said: “Nationally care is pretty good, but at a local, community level it’s very patchy and inconsistent.

“I try to avoid going to my local A&E, because I have had some very bad experiences there in the past.

“In 2008 I caught pneumonia for the fifth time in 17 years and had to go to Whipps Cross Hospital.

“They didn’t seem to understand my needs or my condition at all, so now I see going there as a risk in itself.”

Sulaiman claims that over 15 days in the Leytonstone hospital’s intensive care unit, he developed vomiting and diarrhoea, was given oxygen that damaged his lungs, and when he asked to be turned over at 2am, was refused because “the ward sisters needed their rest”.

He added: “I’m aware that my care package is paid for by the tax payer and I am incredibly grateful, but expert care advisors are a necessity for people like me, not a luxury.

“We are the most vulnerable people in society – someone needs to say enough is enough.”

Sulaiman is working with Muscular Dystrophy UK to get three expert care advisors employed across central London’s major NHS trusts.

The charity’s director of campaigns, care and information Nic Bungay claims the “unacceptable” lack of care advisors is costing the NHS £10.1 million in emergency admissions every year.

He said: “This is an unacceptable situation.

“Hospitals waste vast sums on avoidable emergency care, while patients are left struggling alone until they are rushed to hospital, and suffer physical and psychological effects as a result.

“Funding for these key roles are vitally needed and we hope we can work with trusts to rectify the situation.”

He said a meeting with King’s College Hospital NHS Foundation Trust this week, has got things “moving in the right direction”.

Sulaiman added: “The mental health support of a care advisor alone is extremely important.

“Just having a condition like mine has a lot of mental health implications.

“After I graduated in 2012 it took me three years to find a job – that in itself was very depressing and frustrating.

“When I go out it’s hugely stressful when I can’t get into a bar or venue because of my wheelchair.

“I just want to live my life like any other person.”

A spokesman for Barts Health said: "We apologise to Mr Khan for the poor care he received at Whipps Cross Hospital in 2008. Since then we have made significant changes.

"We have put in place a local leadership team to quickly respond to any concerns raised and recruited more permanent nurses.

"Our teams will always strive to meet the wishes of patients and their families while ensuring that the care provided is safe and appropriate.

"We will continue working with Muscular Dystrophy UK to evaluate all options to provide the best care possible for our patients."

The Royal Free Hospital Trust said: "In the last few months, the Royal Free London has begun offering a service to muscular dystrophy  and other patients moving from children’s to the adult’s  service who require respiratory support. 

"These patients will be regularly reviewed by a specialist team who they can also contact for advice."

King’s College Hospital Trust added: "We recognise the need for enhanced support required by patients with muscular dystrophy, and we will be recruiting a Care Coordinator to help manage the clinical aspects of patient care.

"The Care Coordinator will act as a main point of contact for patients; providing extra support with booking outpatient appointments, co-ordinating tests and inpatient admissions, and signposting patients to other sources of support."