Huntington’s Disease – Current Developments

On September 26, Badby Park were delighted to welcome delegates from local and regional CCGs, clinicians at NHS hospitals and Local Authorities to hear the latest news about progress in the treatment of Huntington’s Disease.

Freshly returned from the most recent International Plenary Meeting of EHDN, Professor Hugh Rickards, Consultant in Neuropsychiatry at Birmingham & Solihull MHFT, Honorary Reader in Neuropsychiatry at the Institute of Clinical Sciences, gave the keynote presentation.

Dr Rickards leads a multi-disciplinary service for people with HD, HD gene-carriers and their families in the West Midlands who currently provide care and advice for around 300 people. His team have participated in the majority of HD clinical trials in the UK including EPA, MERMAID, HORIZAN, NOVARTIS AFQ 0006 and SIENA 015-002. Researchers at the Birmingham site have also participated in other observational studies including FuRST, CAB=CHDI, REGISTRY and are preparing for ENROLL-HD and have also pioneered research into the assessment and treatment of depression and psychosis in HD and into the neural correlates of social cognition in HD. Commenting on recent developments, he said:

“It is the first time that any drug has been shown to suppress the effects of the Huntington’s mutation that causes irreversible damage to the brain. Being able to share latest news on this positive development as well as the other excellent research and trial work being conducted internationally helps clinicians, carers and families to have hope and to continue caring for their patients/loved ones”.

 

If you would like more information or a copy of Dr Rickards presentation, please contact Badby Park badbypark@elysiumhealthcare.co.uk or call 01327 301041.

Sue Tompkins, who is the local Specialist HD Adviser for the HDA briefed delegates on the new HDA quality assured accreditation process for care providers.  She also talked people through local services and support available.

“By developing an accreditation programme, we acknowledge the professionalism of providers who want to understand more about the illness and who are willing to invest in how to give the best quality of care to people with HD.It is just one of the many ways the HDA works to provide support.”

If you would like more information about accreditation local services or to contact Sue, please email her sue.tompkins@hda.org.uk

 

And finally, Kirsty Page and Theresa Fitzgerald shared the transdisciplinary approach used at Badby Park and the benefits for residents using a case study prepared jointly with our resident’s parents and the team.

 

 

The case study was available to all delegates with our resident’s parents there to talk about their experience and answer questions.

For more information about any of the above, please contact Badby Park badbypark@elysiumhealthcare.co.uk or call 01327 301041.

During the refreshments, delegates were able to meet with some of our facilities team who provided several examples of how they approach ‘dining with dignity’ – very realistic and tasty samples of beef dinner with all the trimmings and chicken with gravy, veg and potatoes were much admired.



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