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Old 07-07-15, 12:10 PM   #7
Allan
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
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Default Re: Services for Juvenile Huntington’s Disease

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Thanks for that M.

So, I’ve dug a little deeper and discovered that the full NeuroResponse service is currently taking place in the hospital that S attends – but only for Multiple Sclerosis patients.

The service has proved popular with patients, community health professionals, GPs and hospital specialists at UCLH. The NeuroResponse service includes:

NeuroDirect telephone link: a phone service that provides multiple sclerosis patients with a direct link to a specialist nurse at UCLH who can provide expert assessment and advice. Patient satisfaction increased from 49% to 93% after it was launched, with 76% of people with Multiple Sclerosis reporting an improvement in the quality of their life, increased confidence and reduced anxiety. Around 2,500 people are currently enrolled in the service. The MS nursing team use the service for around a 100 patients a week.

This service is staffed by MS clinical nurse specialists and a call handler who are able to offer expert assessment, triage and advice to people living with MS. The nurse can offer self-management advice when needed, triage into appropriate clinics, and liaise with your GP and local multidisciplinary team [MDT] in order to help you in a prompt and effective manner.

When you call for the first time, we create a personalised care plan for you which helps to improve communication between team members, GPs and anyone else who can improve your care. The call handler can assist with administrative calls, such as sending out travel letters, appointment queries and obtaining results.

NeuroView video link clinic: a video-conference clinic which enables our hospital specialists to talk to and undertake routine follow-up reviews of patients in their local health centre, without the inconvenience and cost of patients having to travel to hospital. It has also reduced waiting times for appointments. The NeuroView clinic has now extended to patients in Essex, the Isle of Wight, Jersey and Guernsey. There are plans to link to Gibraltar later this year.

We wanted to offer a more patient-centred and responsive service. We asked patients what they wanted and they told us how we could help them access the right care and advice at the right time, when they needed it. This video clinic service allows patients with spasticity issues who are unable to visit us in person to link in with our specialist teams. Patients go to their local health centre and link via secure videoconference to see a consultant neurologist, clinical nurse specialist, and a specialist physiotherapist. They will then discuss concerns and agree a care pathway alongside their local team in order to improve care as quickly as possible.

My aim is for an HD audio-visual clinic service to go beyond this “halfway house” and for the service to be available from the patient’s home via Skype, Facetime or similar communication. The NHNN already have an HD Telephone Appointment Service in place.

It’s almost 50 years since we had audio-visual communication with guys on the Moon, so what are we waiting for? The next step is one small step for mankind; one giant leap for hd-People.

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