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.

Rare Disease Day!

Rare Disease Day takes place on the last day of February each year (29th February itself being a rare day). Rare Disease Day is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We know that it’s not that rare to have a rare disease, but that’s not how it feels when you and your family experience that odd illness that nobody knows much, if anything, about. We know how important it is to come together and share experiences, to learn from each other and to amplify each other’s voices. We know the importance of working together to make change happen.

Today, NIRDP are holding events, hosted by the Mayor of Ards and North Down Council, and the Mayor of Derry City and Strabane Council. Many thanks to them for their help and hospitality. On Monday we host the 4th Joint North South Conference on Rare Disease at Riddel Hall, Belfast. We are all busy, and delighted to be so.

We hope you can join us- at an event, on Facebook or Twitter. Take some time to acknowledge how awesome you are, and the progress we’re making together. And, if you can, grab a slice of cake to celebrate!!

 

 

An Honour

We are delighted to share the news that our volunteer Christine Collins, has received the honorary award of MBE from Her Majesty The Queen today for her outstanding services to people with rare diseases.

Christine Collins, MBE

Christine, a retired civil servant, is well known for her role as the founding Chair of the Northern Ireland Rare Disease Partnership in 2011 as well as being a widely respected former NI Human Rights Commissioner and winner of 2017 CO3 Trustee of the Year award.

The New Year Honours lists 2018 recognise the achievements of a wide range of extraordinary people across the UK.

Christine comments “It is such a great honour to be recognised with this award; I am absolutely thrilled. I also feel grateful to be able to help bring to light the issues for those who are living with or affected by rare conditions across Northern Ireland.”

Current Chair of the Charity, Fiona McLaughlin adds “We feel incredibly proud of Christine and are delighted that all her hard work has been recognised in this way. Christine has been at the heart of our charity for many years and works tirelessly to ensure that no one should be disadvantaged because of the rarity of their condition.”

Partnership meeting and AGM, 5 December

It’s time for our Annual General Meeting and partnership meeting- join us on 5 December at the Pavilion, Stormont, Belfast, BT4 3TA.

 

We’ll be presenting our annual report and accounts for 2016-2017, updating everyone on what we’ve been up to since, discussing the results of the survey on communications, and planning for the way ahead. And, of course, formally launching the Stronger Together project with the Big Lottery Fund!

Research teams from QUB will be helping us to consider educational priorities, and a patient passport.

We’ll start with scones and end with lunch. Will we get a cake?

We’d love you to join us- just register below so we count you in.

Registration

 

Foyle & NW forum

We had a meeting of our Foyle group on Monday 6 November & were delighted to mark the start of the Stronger Together project in the area.

Our Project Oficer is Tanya Boggs, and she’ll be working across NHSCT and WHSCT to support people living or working with rare disease. She comes to us with many years nursing experience at Great Ormond Street Hospital. Tanya can be contacted at tanya@nirdp.org.uk  07927 170 138 and will be working 18 hours per week.

We welcomed Helen, Jane and Ashleen from QUB, all of whom are working in the area of rare disease- education, communication and genetics.

Gina updated us on the work of the Our Children’s Voice group- we’re looking at how NIRDP and OCV can work together to support families in border areas.

Carol reported back from one of the WHSCT meetings on savings/ cuts. The financial shortfall is less significant now, but there’s always negotiations to be had. We encourage members to get their voices heard and participate in discussions.

Creea Convery from MND Association raised the issue of challenging referrals from GPs to specialists- either not soon enough, or with inadequate information for the neurologists to triage appropriately.

Neurological Care Co-ordinator, Tracey Magowan, talked about the role of care advisers based at neurology clinics. They support patients and families to navigate the systems, sign post, and provide localised information and fact sheets. Another care adviser is being recruited to cover clinics at Altnagelvin.

We had another chat about the needs of patients with EDS. NHS England are working on a care pathway. NIRDP are interested in developing a piece of work looking at the patient journey. This may form part of the peer support work during the Stronger Together project. Watch this space!!

We agreed to gather again for a pre Christmas cuppa and chat at the City Hotel on 14 Dec, 11am.

next steps- staff!

We are delighted that we have been awarded funding by the National Lottery through the Big Lottery Fund, for a 2 year pilot project. The Stronger Together project will work to build capacity within and across the rare disease sector and help to identify development areas for the future.

We will employ 2 part time, home based staff, one to cover the Western and Northern Trust areas, the other to cover Southern, South Eastern and Belfast areas.

The Project Officers will build up knowledge and support in their areas, linking with health & social care and other voluntary organisations. The project officer team will be first point of contact for people living and working with rare disease.  The project will provide practical advice, signposting, peer support and volunteering opportunities. It will also work to improve networking, partnership engagement and seek to influence relevant policy.

Our application to the Big Lottery Fund was heavily influenced by the discussions in the workshop series held in the Spring- thanks to everyone for their input in shaping what is becoming the Stronger Together project. We will continue to share our learning to improve services.

Information about the posts and the application process is available at Community NI

 

Please share with anyone you know who may be interested in working with us. Applications close on 7 July, 5pm. CVs will not be accepted.

You couldn’t make it up…

Many of us have had those moments. The moments when we’ve been baffled/ bewildered/ outraged by our dealings with healthcare professionals:
e.g. A&E telling you your case is too complicated and to talk to your GP
e.g. your GP telling you to register at another practice because your condition is too complex
e.g. your ‘specialist’ telling you they don’t believe in your condition.

We’d like to collate these, and share them, to help make a difference.
What’s your moment?

Access to Specialist Drugs – Share your Opinion!

NIRDP are glad to share information about a series of DHSSPS consultation events. Access to specialist drugs is vital. What do you think of the recommendations below? Can you attend a meeting and get your voice heard?

 

Announcement of Public meetings for Individual Funding Request Evaluation

Health Minister Jim Wells commissioned an evaluation of the Individual Funding Request (IFR) process.

Minister Wells said: “Whether you are a patient, a carer, a member of Health and Social Care staff or just interested in our Health Services then this is an opportunity to have your opinions considered.”

The evaluation was in response to concerns that the process was not providing access to specialist drugs that are not routinely available in circumstances where there is an agreed clinical need.

The evaluation is complete and five recommendations have been published which aim to strengthen the process and improve access to specialist drugs not routinely available.

The recommendations are as follows:

· That the existing exceptionality criteria should be amended to remove the reference to 95%.
· That the establishment of regional scrutiny committees should be considered to ensure all IFR applications are subject to regionally consistent clinical input and peer review.
· That the existing IFR guidance should be revised to include greater transparency and to enhance patient involvement.
· That the Department should establish a Specialist Medicines Fund to meet the costs of administering and maintaining increased access to specialist drugs.
· In order to resource the new fund, the HSC should re-introduce charging for prescriptions.

The Minister invited everyone with an interest to attend their local meeting: “Public meetings have been organised to provide an opportunity for public discussion of the proposed changes. I would encourage anyone interested in the evaluation and its purpose to come along and have an opportunity to add your views and comments into the process.”

The Public Meetings will take place from 7- 8.30 pm at a number of venues across Northern Ireland as listed below:

· 24 March 2015 Lecture Room 1, Altnagelvin Area Hospital, Glenshane Road, Londonderry BT47 6SB

· 31 March 2015 Lakeview 2, Craigavon Civic Centre, Lakeview Road, Craigavon BT64 1AL

· 13 April 2015 The Chestnut Suite, Lagan Valley Island Civic Centre, Lisburn BT27 4RL

· 21 April 2015 Antrim Civic Centre, 50 Stiles Way, Antrim BT41 2UB

· 28 April 2015 Belfast City Hospital, 51 Lisburn Road, Belfast BT9 7AB

Notes:

1.Whilst registration is not compulsory, to assist with catering arrangements it would be helpful if you could register your intention to attend by emailing us at IFRPC@dhsspsni.gov.uk

or post to:
Secondary Care Directorate
DHSSPSNI
Castle Building
Belfast
BT4 3SQ

Let’s talk about the plan

NIRDP are pleased to announce that we will be coordinating a series of open meetings across the region for consideration of the draft NI Rare Disease implementation plan.

The meetings are open to all, and are being held in association with senior clinicians, experienced in a range of rare diseases. They are an opportunity to meet others interested in rare disease, and to share experiences and thoughts on the development of services until 2020.

What matters to you?

 

DATE PLACE TIME SENIOR CLINICIAN  VENUE  
17 DEC 2014 GRANSHA LONDONDERRY 2PM-4PM Dr Stewart BOARD ROOM, GRANSHA
6 JAN 2015 SWAH, ENNISKILLEN 2PM-4PM Dr McConnell TBC
7 JAN 2015 NEWRY TBC TBC TBC  
8 JAN 2015 CRAIGAVON Area Hospital 2PM-4PM Dr McConnell Dr Magee Conference Room, Portadown Care and Treatment Centre
12 JAN 2015 ANTRIM 2pm to 4pm Dr Stewart Whinstone Suite, Antrim Civic Forum
13 JAN 2015 BELFAST 4PM-7PM Dr Deidre Donnelly, Dr Shane McKee, Dr Tabib Dabir SCIENCE BLOCK A, RVH

 

The Department wants “to ensure that feedback from service users and carers underpins the identification of the commissioning priorities for rare diseases.” These open meetings are one way of being involved in that process.

We will be putting each event up on Eventbrite- so that you can tell us if you are planning to come, and we can get the tea/coffee and biscuit orders right (or anything else you need to make the event work for you!)

We will also be producing a key points guide to the draft Plan- so you can focus more easily on what matters to you…so watch the website…

You can also email ImpPlan@nirdp.org.uk  chat to us on Facebook or twitter and/or respond to the DHSSPS directly at RDIP@dhsspni.gov.uk

We are looking  forward to seeing you!