Treatment concern for brain condition
A Lanarkshire teenager had an agonising wait for specialist neurological tests as he lay for nine days in a Wishaw hospital that doesn’t have the expertise to treat him.
Mark Sweeney, who was born with spinal conditions including a form of spina bifida, was admitted to University Hospital Wishaw on June 27 with severe headaches and vomiting caused by lifethreatening condition hydrocephalus – a build up of fluid on the brain which causes pressure on the skull and can result in brain damage.
Mum Margaret feared the shunt that was implanted in his brain to drain excess fluid had become blocked, leaving him in agony.
Mark, 19, and his family were told by doctors at the Wishaw hospital that they do not have a neurology department and could therefore only observe and monitor rather than treat his condition.
Margaret pleaded with Wishaw clinicians to agree with Liverpool unit The Walton Centre that Mark could be transferred there to see leading consultant neurosurgeon Neil Buxton, a specialist in hydrocephalus and congenital spinal anomalies who has treated him for 15 years.
After eight days in the Wishaw hospital, staff there told the family an application had to be made to the funding board to allow a Scottish patient to be treated in an English hospital.
A breakthrough finally came on Friday when a bed became available at Liverpool.
But without the offer of an ambulance, Margaret once again had to drive wheelchair user Mark more than 200 miles to Liverpool herself.
While waiting for approval for Mark’s transfer, disgusted Margaret said that her son was being treated as no more than a commodity.
“We haven’t had the offer of an ambulance in the 15 years Mark has been going up and down to Liverpool, and that’s not going to change now,” said Margaret, of Motherwell.
“To them, my boy is just a price bracket. It all comes down to money and politics. He has out-priced himself due to all the treatment he has had.”
Mark urgently requires intracranial pressure monitoring ( ICP) through his skull to establish if the shunt is functioning – but University Hospital Wishaw does not have the neurology expertise to carry out this procedure.
Margaret refused an offer of transferring her boy from Wishaw to Glasgow’s Queen Elizabeth Hospital in Glasgow after she claims complications arose during surgery there seven years previously.
A tearful Margaret continued: “My boy was fed up sitting there in a ward surrounded by men in their 80s with dementia and nobody was doing anything, apart from asking the same questions they’ve asked a hundred times before.
“His spirits were at an all-time low. He went in there with pressure issues in his head and they were taking chest X-rays to check him for pneumonia.
“What is that all about? They do not know what half his conditions mean and they don’t know how to treat them. The minute you complain, you are a trouble maker.”
Margaret, 41, who has driven Mark on the 400-mile round trip to and from Liverpool frequently for 15 years, says on one occasion the family had to stay in the city unnecessarily for 10 days because neither the Merseyside nor the Scottish Ambulance Service would cross the border to bring him home to Lanarkshire.
In the end, the family’s GP practice had to fork out for a private ambulance transfer.
During those 15 years, the family haven’t recouped a penny of their significant travel expenditure.
“I will never get tired of looking after my son, but I do get tired of the system and politics and everything being down to money,” said Margaret, who was growing increasingly concerned about a deterioration of Mark’s sense of feeling in his legs and of a patch of fluid developing on his back.
“Neil Buxton’s hands are tied too because of NHS funding issues. He said we are now going to have to start picking our fights about what can be done for Mark.”
Mark’s current predicament is not the only waiting game the family has been forced to play.
Mark hit the headlines last year when a crowdfunding page was launched in a bid to raise cash for a ReWalk bionic suit which, during a trial, allowed Mark to walk for the first time in six years.
To date, family and friends have raised £7300 – well short of the appeal’s £80,000 target.
Full-time carer Margaret says her fundraising activities have had to take a back seat because Mark has been desperately unwell.
Now her focus is on getting her son the tests he needs at The Walton Centre in Liverpool where medics have treated him for most of his life.
“I wasn’t asking for millions of pounds of life support and I know there is no miracle cure,” insists Margaret, of Jerviston.
“I just wanted him to be able to go to Liverpool to be treated by people who know and understand his condition.”
Dr Jane Burns, NHS Lanarkshire medical director for acute services, said: “We are not able to discuss individual cases in detail but our priority is to ensure that Mark receives safe and effective care which bests meets his needs. We have been working with the relevant specialist clinical teams in both NHS Greater Glasgow and Clyde, and The Walton Centre in Liverpool, to improve communications links between all parties to ensure Mark continues to receive the appropriate level of care going forward and that there is a local awareness of his specialist needs.
“On this occasion, arrangements were put in place at the earliest opportunity to enable Mark to travel to The Walton Centre.
“As with all treatments, NHS Lanarkshire will arrange transport if the treatment required is not available in Scotland. If a patient decides to travel elsewhere they must arrange their own transport.”
A spokesperson from The Walton Centre said: “The Walton Centre cannot comment on specific cases, as it would breach patient confidentiality. The Trust works hard to minimise or avoid any delays in care. Patients are always at the heart of the decision making process, so the most appropriate treatment can be provided in a timely manner.”
It all comes down to money and politics - Margaret Sweeney