21 September 2021

Care in life and death for Southampton patients

In Southampton we run an Atypical Parkinsonian Syndrome (APS) clinic for patients in the Wessex region, caring for patients who have rare terminal neurological diseases, presenting like Parkinson’s Disease, called progressive supranuclear palsy, multiple system atrophy and corticobasal syndrome.

These are rare diseases. Around five in every 100,000 people will be affected.

Patients are between 40-65 old, and tend to only live for around six years after the onset of the disease. They have difficulty with their vision, thinking processes, speech, mobility, and swallowing.

Dr Boyd Ghosh, Neurology Consultant for University Hospital Southampton, says: “Unfortunately our patients can become dependent pretty quickly, and sadly there is no cure for APS.”

We see people every three to six months in clinics, where we assess the patient’s needs.

Through Charity support, we’ve been able to build up an equipment library to help them in their every day life. This means that we can lend items such as walking frames and anti-tremor spoons, to see if it is of benefit for them. Then the patients can buy the items knowing it will help them in their daily life.”

The team are always trying to give our patients the best quality of life that they can.”

Sadly, these diagnoses can be really difficult to diagnose accurately in life and families are often left with some degree of uncertainty about the diagnosis. Families want to have closure for their loved ones, but we can only confirm the diagnosis with a post mortem.”

Patients have previously donated their brains after their death to brain banks in London for a post mortem diagnosis and to store their brain for research.”

This is no longer an option, so we have set up a facility in Southampton for the APS patients, where we can get a post mortem diagnosis and store the brain for research.

This has only been set up for a few months, so it is very exciting for us!”

 

 

As well as certainty for the diagnosis, our patients want to be able to help us in our research, and many of them choose to leave parts of their body to science.”

“Doing research has been crucial in understanding more about this disease. We’ve been involved in research studies with the University of Southampton which have used brain samples from elsewhere to carry out the research. With this facility to store brains from our patients, we will be able to help much more with research.

With permission from our patients and their families, we can provide clinical information about their disease as well as brain tissue. We’re hopeful that this will make all the difference in our goal to understand the disease better and improve diagnosis and treatment.”

However there are still associated costs in transporting patients and their brains between hospitals and this is where funding from Southampton Hospitals Charity has been integral.”

We run one of the largest APS clinics in the UK, with between 145-160 people and feel passionately that patients and their families should have the best care possible both during their life and after their death.”

Support our pioneering work today. Visit https://southamptonhospitalscharity.org/donate and quote ‘APS research’.

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