Devic's and NMO Worldwide Support 

Dear NMO Patient

 

1. Meeting for people affected by Neuro MyelitisOptica (or Devic’s Disease)

I would like to invite you to an open meeting for people affected by DEVIC’s Disease. This is to be held on
Thursday 7th February, 2008
from 7pm to 9pm
The Neurosupport Centre, Norton Street, Liverpool
www.neurosupport.org.uk or ring 0151-298-2999

If you are unsure of directions, please contact me. There is plenty of parking on site and light refreshments will be provided.

Why hold a ‘local’ meeting?

The meeting is primarily aimed at people with NMO (or Devic’s Disease) within a reasonable travel distance of Liverpool – but anyone who wishes can attend!

Four annual ‘national’ meetings have been held but this is the first time we are trying to see if a ‘regional’ support group might be established that can meet say 2 or 3 times a year. An outline for the meeting is below.

2. Andrew Jones, MS Nurse Specialist, the Walton Centre.

Some people affected by NMO have seen MS Nurses because there are some similarities with symptom management between NMO and MS and the impact on daily lives may be similar.

Dr Anu Jacob has encouraged Andrew Jones, an MS Nurse Specialist, employed by the Walton Centre but based in North Wales, to take a special interest in NMO and, as part of his ‘education’, Andrew would like to attend this meeting to hear YOUR STORIES about diagnosis, treatment, symptoms, impact on daily living, any psychological problems, etc.

If you wish to stay overnight and need any help with finding local accommodation, please get in touch with me.

I do hope you will be able to attend this event; please confirm if you can.

Andrew is quite happy to receive telephone enquiries from people affected by a CONFIRMED diagnosis of NMO. I hope you can understand why it is necessary to stipulate that the diagnosis is confirmed by a Consultant Neurologist. Andrew’s number is 01745-443-022.

3. NMO Alert Card

There are many health conditions where people carry an ‘alert card’. This provides details of you personally and your health condition(s). Sometimes people also have bracelets or charms that contain such information.

Gaylia Ashby, who many of you know, has felt for some time that the possibility of a relapse – with serious consequences if the relapse is not taken seriously and treated quickly in the correct manner – warrants an Alert card for NMO.

A number have people have been consulted on the contents of the Card and I hope you find it acceptable/useful. Any feedback would be greatly appreciated. In particular, you may wish to inform your GP and Consultant neurologist.

You can get cards from us . You may wish to complete them all with your details and carry them safely in different places – purse/wallet and car glove compartment - and keep the third one as a reserve.

The cards should ideally only be given to someone with a confirmed diagnosis of NMO. If not, this may lead to inappropriate actions and treatment being given.

 

Yours sincerely,

 

Tony Murphy

Patient Advice and Liaison Service (PALS) Manager

Outline Agenda
Meeting of people affected by NMO
Thursday 7th February, 2008
7pm at Neurosupport

 

1. Main Aim – to help Andrew Jones understand the issues around living with NMO. Andrew is an MS Nurse Specialist who has taken a special interest in NMO and will be attending Dr Jacob’s monthly Atypical Demyelinating Conditions Clinic.
2. Secondary aim – to network local people affected by NMO, who may wish to meet on a regular basis, eg every 3 or 4 months.
3. Thirdly - To review literature available to people affected by NMO. Feedback on the NMO Alert Card welcome.
4. Fourthly – to issue a press release about NMO, the Walton Centre, Neurosupport, etc including publicity for Eileen Bradley’s SKY DIVE when she raised over £2,000 for the Walton Centre’s neuroscience Fund!
5. To acquaint attendees (briefly) with the Neurosupport Centre and the services offered there.
6. Any other business.