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Old 16-05-15, 12:24 AM   #3
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,149
Default Re: Services for Juvenile Huntington’s Disease


Hi everyone

A Project to Improve the Services for Juvenile Huntington’s Disease

The aim of this funded project is to identify patients/families with JHD, identify which services they are receiving, and ask both them and the professionals currently involved in the care their opinion of alternative models of care; specifically, concentrating expertise in a traditional MDT to which patients/families travel or alternatively establishing a virtual Multi-Disciplinary Team using Tele-health, or a secure Skype system via the internet.

So, how can we provide a system of care that will cater to all their needs, their medical, educational, physical, social and recreational healthcare? How can we move forward in our quest for multitasking MDT’s that will help to improve the whole Care Provision of our JHD-individuals and their families?

What the project is trying to do

JHD is defined as onset up to the age of 20 years. At best, treatment is symptomatic and supportive; there are no evidence based guidelines for management but, recommendations suggest that patients/families should be managed within multidisciplinary teams [MDT].

The first task is to make contact with the JHD population in the whole of the UK. According to the definition above it is thought that there might be 300 young people in the UK, with ages ranging from 0 - 25, with this disease. Finding them for the project will be a difficult task. If you are able to assist this search in any way the Project team would be very grateful. See contact details below.

What this might mean for families affected by JHD.

The idea is to convert, enable and enhance what might currently seem to be the somewhat dys-functional treatment of JHD patients into a “wholesome” approach. This would be seen as providing a meaningful method of making sure the physical, cognitive and pharmaceutical therapies work better. More importantly, it would bring many people to the “virtual” table to discuss each JHD-patient.

We would envisage a fully functioning MDT team: a Neurologist; a Psychiatrist; a Psychologist; a Neuropsychologist; a Genetic Counsellor; a Physiotherapist; an Occupational Therapist; a Speech & Language Therapist; a Dietician; a Carer or Family Member; a Primary Care Doctor; a Dentist; an Optician; a Social Worker; and the most important person of all – the JHD-person. As it would be an almost impossible task to gather all these people en bloc at any one time – it is hoped, with the aid of communications technology, that we can bring a majority to the table, if only virtually.

Education, Health and Care Plans should also be created for young people with JHD. This would be an holistic way of bringing Health and Social Care into operation - to last until the age of 25 [or until the young person has finished education or training or they transit into Adult Services]. In one way, it is easier to access funding - ie for Social Care, respite, short breaks or support workers and it gives the child or young person the right to a personal budget and, if required, direct payments. This would have a positive impact on the experiences of both the young people and their parents/carers.

If you are interested in taking part, as an individual or as a family, please contact me by Private Message.

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