What do you want the UK rare disease plan to include?

Those of us who live or work with rare disease in NI have an important opportunity just now. It’s the chance to make our voices heard- to get politicians and policy makers to hear what’s important to us, what will improve the care and quality of life for those affected by rare disease.

The four UK health departments have together produced a consultation document to form part of the basis for a UK plan on rare disease. The rest of the basis for that plan will come from the responses to this document: this is our chance to influence strategy.

NIRDP will be responding to the consultation as a partnership, and are also encouraging everyone with an interest in rare disease to respond individually. The greater the number of responses, the greater the impact. The government need our help to get this right. We have a chance now to get our stories heard, and the government have to respond.

At the NIRDP/RDUK event on 8 May, there was some valuable information, tips and advice on responding to the consultation document from Nick Meade, Policy Analyst.

  • Show your experience, establish why your opinion should be considered.
  • Don’t be constrained by the questions asked.
  • Only cover the topics you want to.
  • Identify any gaps- what have they missed out?
  • Give evidence from your experience to back up your point.
  • What is good about the plan? Let them know.
  • When being critical, give suggestions for improvements.
  • Be reasonable.
  • Praise, criticise, praise.

There will probably be one indidvidual tasked with reading all the responses, so make it easy for him/ her to grasp your points.

  • Be clear and concise.
  • Consider the layout.
  • Have an introduction and conclusion, use bullet points.
  • Ask someone with no interest in rare disease to read it first to make sure it makes sense to a lay person.

 

email your response to rarediseasesconsultationresponses@dh.gsi.gov.uk

post to Sarah Bramley-Harker, Department of Health, Screening and Specialised Services Team, Room 5W35, Quarry House, Quarry Hill, Leeds, LS2 7UE

contact your politicians– give them real examples of what you need to see in your area. What will make a difference to their constituents? Remind them that, collectively, rare diseases are not rare and that, since services are patchy and poorly integrated, patients and families can struggle to get the help and support they need.

contact NIRDP– if there are particuar points you want to be sure the NIRDP response also includes, contact us: info@nirdp.org.uk, phone 0800 917 0222 and talk to Sarah McCandless, or post to 6 Ava Crescent, Belfast, BT7 3DU.

UK Rare Disease Plan consultation and webinar

At the NIRDP launch on 29th February, Rare Disease Day, Edwin Poots, the NI Minister for Health, Social Services and Public Safety, launched a public consultation on a UK plan for rare diseases. (See the consultation document here). This is a joint consultation, run by the four UK Health Departments.

Rare Disease UK and the Northern Ireland Rare Disease Partnership are concerned that the consultation document presents an overly optimistic view of the ability of each of the UK’s health services to respond effectively to the needs of all patients affected by rare diseases. RDUK are organising a series of events in order to create discussion around the consultation. They want to gather as much input as possible to influence the final plan, making sure it is effective, and can make a real difference to the lives of people living with rare diseases in Northern Ireland and across the UK.

The Northern Ireland event will take place at the Dunsilly Hotel, Antrim on the 8th of May between 10am and 4.30pm. Places are limited so if you wish to attend please complete the attached registration form and send to Samantha Reeve via email at samantha@raredisease.org.uk.

NIRDP and RDUK are hoping to gain the views of a broad range of stakeholders at this event. Those in attendance will include patient organisations and patients/carers, clinicians, health professionals, commissioners, researchers, industry and anyone with an interest in improving services and facilitating research to benefit patients with rare diseases.

A webinar for Northern Ireland, which will summarise Rare Disease UK’s views on the consultation, along with advice for those interested in responding, will be held on the Monday 16th of April, at 1.30pm until 2.30pm. The webinar will include a presentation by the Chair of Rare Disease UK, Alastair Kent and time for questions and discussion. [A webinar is a live presentation delivered over the internet].

To attend the webinar, please register your interest with Samantha Reeve via Samantha@raredisease.org.uk and on the day go to the following URL: www.anymeeting.com/RDwebinarNI1

If you are not available to view the webinar live, you can still download it afterwards from our website. You will still be able to email us any questions you may have.

Practical information

Please make sure that your computer is updated to ensure you don’t have any technical difficulties using the programme. You can do this by clicking here anytime before the event is due to begin.

You will need an internet connection and speakers or headphones.

When you join the webinar, please ensure that when entering your information, you write the name of your organisation, or your interest in rare diseases (e.g. patient, carer, professional occupation) into the ‘location box’ NOT your geographical location.

RDUK are grateful to the following companies for their support in enabling these consultation activities: Actelion, Alexion, Baxter, Bio Marin, CSL Behring, Genzyme, GSK, Nordic, Orphan Europe, Pfizer, Shire and Swedish Orphan.

 

Lift off!

NIRDP was formally launched on Rare Disease day with much support from patients, families, health professionals and politicians.

We were delighted that the NI Minister for Health, Social Services and Public Safety was able to participate in the event- cutting cake, presenting and, most importantly, spending time chatting informally to patients and families. Minister Poots gave up a lot of his time to support the work of the partnership, and we’re looking forward to ongoing work together. The Minister took the opportunity to launch the long awaited consultation on the UK Plan for Rare Disease. NIRDP will be working actively with RDUK to facilitate consultation within Northern Ireland.

NIRDP is a group of interested families and professionals who donate or volunteer their time. Members have health conditions, caring responsibilities, jobs and family lives. The Partnership could not have developed as it has without the support of others. In particular the vision, leadership and very practical support of the Patient and Client Council. They developed a questionnaire, analysed the results and published a report  on patient experience of diagnosis, and organised the very successful launch event.

The decision of the PCC to film some of the experiences of families living with a rare disease has left us with a wonderful resource for awareness raising. (Once we work out how to upload the films to this site, that is. Watch this space!)

The development of NIRDP is itself a reflection of the method and principle ‘Stronger Together’.  If you’re interested in supporting the work in any way, click on that ‘Join us’ button up there, and we’ll chat soon!