neurology adviceline

Today (Tues 1 May) Belfast Health & Social Care Trust announced that they are recalling neurology patients for a review appointment within the next 12 weeks. Only patients under the care of Dr Michael Watt are being recalled.

Patients will have received a letter today, and should call 0800 980 1100 for advice and to make a suitable appointment.

Additional clinics are arranged and will not affect current waiting lists.

The full statement from BHSCT is here, and the story is being widely covered in the media.

Neurology is a regional service, so patients and families outside BHSCT area may be affected.

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Muscular Dystrophy UK: Employability Skills Weekend, 19-20th May

As part of Muscular Dystrophy UK’s Work Experience Project Moving Up, Trailblazers are hosting their first ever Employment Skills Weekend.

The fully funded conference will take place on Saturday 19th and Sunday 20th May in London with free rooms available at the Premier Inn Archway and sessions taking place at the Holly Lodge Community Centre.

To find out more, or to sign up for the weekend click on the link below:

Trailblazers host first employability weekend

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Busy times at the NIRDP

Well, it has certainly been a busy few months for the NIRDP team; we have hosted events, participated in events and even got out and about at Queens University Belfast with a bit of lecturing.

Below is just a snippet of what we have been getting up to since January:

  • 29 January; our colleagues at QUB hosted an event, ‘Advancing registry and information resources for rare diseases’.
  • 3 February; we participated in the annual Action Duchenne NI event
  • 28 February; rare disease events at Bangor Castle and Guildhall, hosted by the 2 mayors
  • 5 March; Joint North- South Rare Disease Conference, Belfast
  • 9 March; lecture for 5th year medical students, QUB
  • 12 March; lecture for 1st year medical students, QUB

And that is just a small part of the story!

NIRDP volunteers and staff work hard to connect, share and learn. Most of us juggle some combination of health issues, caring responsibilities, paid work and other volunteering, which means that few of us can work full time on NIRDP activities. Luckily, we have a strong belief in partnership working, and even better, we have seen just how effective it can be!

Our conference, an all island event, was a great example of this . Also, a phenomenal task! We were extremely lucky, and grateful, to receive lot of the practical support from the Department of Health in making this happen.

Attendees came from across the whole island, and speakers, representing the public, private, voluntary and academic sectors, were on hand to share their expertise.

We were delighted to host the Minister of State from the Office of the Taoiseach, Joe McHugh, Chief Commissioner of NI Human Rights Commission, Les Allamby, Chief Medical Officer, Dr Michael McBride, Mark Taylor from the Bengoa Expert Panel, and Bettina Mavrommatis from NHS England.

The sessions covered topics including:

  • ‘Nothing about us without us’
  • rare disease policy
  • participating in research
  • building capacity
  • ‘what does success look like?’
  • ‘beyond the strategies; next steps’

In addition to the weighty agenda, NIHRC held a side event during the lunch break and Northern Visions (NVTV) recorded interviews and conference footage which were later broadcast (click here to see more).

Towards the end of the day Dr Tabib Dabir (Clinical Director Molecular Diagnostics and Microbiology) and Dr Avril Kennan (Chief Exec, Medical Research Charities Group) judged our poster competition, and Minister McHugh presented the prizes and NIRDP awards. The award for Public Service was presented to Dr Fiona Stewart, and NIRDP award for Community Service went to Rosemary Arbuthnot.

Most importantly, our events would not have enjoyed such huge success if it were not for the participation of all our members and partners. Thank you to everyone who was able to participate by attending any of the events (despite the blizzards!), or by sharing our social media posts.

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EVENT NOTICE:

Health Information Event – Tuesday 12th June 2018, Belfast

The Patient and Client Council in conjunction with the Patient Information Forum, is holding an event to explore the accessibility and availability of Health Information. 

Information is an essential component of health care. This event is for anyone interested in, and committed to improving health information in Northern Ireland.

This will be an interactive conference where guests will hear from experts who will share good practice and case studies and there will be opportunity to be part of the development of an action plan on health information for Northern Ireland.

For more information and to book your place visit https://www.pifonline.org.uk/pif/?ee=129

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Rare Disease Information Hub: We Need Your Views

It has been identified through recent research that there is a need for the development of a website or “information hub” where rare disease information can be accessed or linked in an accessible format.

We are keen to improve information sharing and communication for rare diseases in Northern Ireland, however,  as resources are limited, we are now keen to seek your views on which components should be developed first as we may need to develop items specifically tailored for Northern Ireland or signpost individuals to appropriate resources that exist elsewhere.

We would really value your input and as such would be very grateful if you would take the time to consider completing an online survey here:

https://www.smartsurvey.co.uk/s/Hub_priorities2018/

Results from this survey will be collated anonymously and used to help develop resources for individuals affected by rare disease(s) in Northern Ireland.

Please do indicate if you are happy to be contacted should there be follow-up questions. No identifiable information will be used without your explicit consent in a follow-up conversation.

If you have any questions or wish to provide further details please do not hesitate to get in touch via email: Julie.mcmullan@qub.ac.uk.

Thank you for your help with this research and for considering participating in this project.

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