The Brittle Bone Society actively encourages involvement from the OI community in policy consultations on a national and international level.
The Brittle Bone Society has taken part in a number of UK consultations.
Consultation on reforming NHS England Clinical Reference Groups
An overall reduction in CRG numbers was proposed and after discussion and consultation with our healthcare professionals and others, the Brittle Bone Society submitted a thoughtful response to ask this be carefully reviewed in favour of the OI patient. We are happy to report there was a positive outcome. To find out more and to read the NHS response see here
All Party Parliamentary Group (APPG)
In August we asked BBS members and supporters to contact their MP’s to encourage them to join a new All Party Parliamentary group for rare diseases. We are happy to announce the first of these meetings is due to be held in January 2016. For further information see here
Consultation response to the Government's mandate to NHS England 2020
You can read the full BBS response here
Rare Diseases UK (RDUK) is the national alliance for people in the UK which aims to help people with a rare disease by providing help through information and updates, consultations, research into rare disease healthcare and diagnostics. They also provide a network in which people can share their experiences and meet others who may be affected by a rare type of disease.
This report was conducted in 2010 and details the real life experiences of people living in the UK (be this a patient themselves or a relative or carer, etc.) affected by rare diseases. It addresses some issues such as how easily they were diagnosed, the amount of information and research they could access and the degree of support they received. You can read the full report here: http://www.raredisease.org.uk/documents/RDUK-Family-Report.pdf
This survey looked into the treatment of those suffering from rare diseases in Wales specifically. It reported the struggle (that is often the case for most people with a rare disease) on receiving a diagnosis on their condition. Much report being brushed off by GP’s and details their real experiences of fighting to have them heard and helped. The full report can be read here: http://www.raredisease.org.uk/documents/Research%20Report/rduk-walessurvey-report-2.pdf
This Scottish survey, conducted in 2012, looked into the experiences of those in Scotland with a rare disease and identified some of the common issues they face including a diagnosis and accessing appropriate service, information and support throughout the progression of their condition. You can read the full report here: http://www.raredisease.org.uk/documents/Research%20Report/rduk-scotland-survey-report.pdf
Rare Disease Implementation Plan in all Home Nations
The Rare Diseases Advisory Group makes recommendations to NHS England, NHS Scotland, NHS Wales and NHS Northern Ireland on developing and implementing a strategy for rare diseases and highly specialised services.
BBS have been involved in discussions around the UK Rare Disease Plan. Detailed below are the four countries draft Implementation Plans for Rare Disease.
The Draft England Rare Diseases Implementation Plan: http://www.england.nhs.uk/2015/01/27/prioritising-services/
The Draft Scotland Rare Diseases Implementation Plan: http://www.scotland.gov.uk/Consultations/Current
The Draft Wales Rare Diseases Implementation Plan: http://wales.gov.uk/consultations/healthsocialcare/disease/?lang=en
The Draft NI Rare Diseases Implementation Plan: http://www.dhsspsni.gov.uk/consultation-draft-ni-rare-diseases-implementation-plan.pdf
See updates from NIRDP http://www.nirdp.org.uk/
All Ireland Focus Group
On Friday 27th February 2015, BBS Chairman Elaine Healey, CEO Patricia Osborne, Treasurer Robert Gordon and staff will meet with volunteers from Northern Ireland and Republic of Ireland in Dundee to discuss a draft constitution for progressing issues specific to the Republic of Ireland.
A national rare disease plan for Republic of Ireland 2014 -2018 can be seen here: http://health.gov.ie/blog/publications/national-rare-disease-plan-for-ireland-2014-2018/
Scottish Government Policy Consultations
In a first for the Scottish Parliament, the Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, answered questions asked by the public as part of this 12 November Health and Sport Committee session. Mr Neil was asked a series of questions which had been submitted to the Committee via the Scottish Parliament's website. In total, 126 questions were asked and 18 selected to be put to the Cabinet Secretary. The question posed by the Brittle Bone Society was one of the questions selected and can be viewed here
We completed a consultation which led to us being invited to an important DG Sanco conference about European Reference Networks.