As part of Immunodeficiency UK’s role in patient advocacy for people affected by primary immunodeficiencies we respond to public consultations on healthcare issues, ensuring your voice is heard.
In this section you can find out more about our activities when we were known as Immunodeficiency UK.
- PID UK responded to the UK National Screening Committee public consultation on newborn screening for Severe Combined Immunodeficiency (SCID).
Immunodeficiency UK responded to this public consultation exercise launched by the UK National Screening Committee (UKNSC) in support of the case for implementing a newborn screening programme for SCID within the UK.
- Immunodeficiency UK responded to the National Institute for Health and Care Excellence Highly Specialised Technologies consultation: Strimvelis for treating severe combined immunodeficiency caused by adenosine deaminase deficiency ID926].
Strimevlis is a commercial gene therapy treatment for ADA-SCID. Our consultation response helped NICE understand the impact of ADA-SCID has on affected children and the family unit and how gene therapy can transform all their lives.
- NHS England Clinical Commissioning Policy public consultation on Haematopoietic Stem Cell Transplantation (HSCT): Teenage and young adults (TYA).
This policy extends the paediatric commissioning to people aged 16-24 years (the defined TYA group) and makes specific reference to immunodeficiencies. In collaboration with the CGD Society, Immunodeficiency UK replied that the policy was discriminatory to people with PID aged 25 years and older for whom HSCT, also known as BMT, may be a clinically recommended option.
- Response to the NHS consultation on proposed changes to NHS England Clinical Reference Groups. March 2016.
- Response to NHS England policy consultations: ‘Use of Rituximab for cytopaenia complicating primary immunodeficiency’ and ‘Plasma-derived C1-esterase inhibitor for prophylactic treatment of hereditary angioedema (HAE) types I and II’. February 2016.
- Government’s consultation on ‘Amendments to the Statutory Scheme to Control the Prices of Branded Health Service Medicines’.
In December 2015 Immunodeficiency UK responded to this consultation as the proposed changes threatened the viability of immunoglobulin provision in the UK and therefore access of PID patients to a range of products that are essential to their well-being. Immunodeficiency UK requested that plasma products should be exempted from the application of the reductions suggested through the proposed changes to the statutory pricing scheme.
Immunodeficiency UK also wrote to George Freeman MP Minister for Life Sciences concerning this matter.
- Northern Ireland Department of Health, Social Services and Public Safety consultation on the Individual Funding Request (IFR) Process
In May 2015 Immunodeficiency UK responded to the public consultation on the (IFR) process that was originally set up to provide access to unapproved specialist drugs where there is an agreed clinical need but where they are not routinely commissioned and the proposal to reintroduce prescription charges in Northern Ireland.
- NHS England Consultation: Investing in Specialised Services
In April 2015 Immunodeficiency UK responded to this consultation proposing a set of principles and high level processes for the development and resourcing of new NHS England clinical policies and specialised services, such as those needed for PID and other rare conditions.
- The Northern Ireland Implementation Plan for Rare Diseases
In January 2015 Immunodeficiency UK responded to this consultation to help provide high quality care for people affected by rare diseases.
- National Institute for Health and Care Excellence (NICE)
Immunodeficiency UK has responded to NICE’s consultation on their approach to public involvement in guidance and standards development.
- The Welsh Implementation Plan for Rare Diseases
In May 2014 Immunodeficiency UK responded to the consultation on the Welsh Implementation Plan for Rare Diseases.
- European Commission consultation on ‘Patient Safety and Quality of Healthcare’: actions at EU level.
In February 2014 Immunodeficiency UK responded to the DG SANCO on-line consultation aimed at gathering the opinion of the European civil society, including patient organisations and healthcare professionals, on the topic of patient safety. Immunodeficiency UK stressed the need for early diagnosis and appropriate treatment to improve quality of life; the need for access to optimum levels of treatment, based on the patient’s needs and following medical advice; existing differences in access to care within and across countries and for the availability of the widest range of immunoglobulins as possible is essential, as patients tolerate each type of immunoglobulin differently.
- House of Commons Science and Technology Committee inquiry on Blood, tissue and organ screening: Variant Creutzfeldt-Jakob disease (vCJD)
In January 2014 the Government asked for written submissions on their inquiry on blood, tissue and organ screening.
This followed an announcement on the 27th November 2013 by the Science and Technology Committee about the risk of transmission of vCJD. This is an important topic given the possible risk of vCJD infection in PID patients who received UK sourced immunoglobulin.
The terms of reference for this inquiry were as follows:
- Are UK policies governing who can donate blood and blood products, tissues and organs sufficiently evidence-based? Is NHS Blood and Transplant overly restrictive about who can donate, or should greater precautions be taken to further reduce risk?
- Is the Government and its scientific advisory structure sufficiently responsive to the threat posed by emerging diseases being transmitted through blood and blood products, tissues and organs?
- Has the threat of ongoing transmission of vCJD through the blood and blood product supply been adequately mitigated?
Read Immunodeficiency UK’s response to this inquiry linked to the submission by the medical professional body UK PIN.
Following the submissions, Dr Matthew Buckland, Chair of Immunodeficiency UK’s Medical Advisory Panel, was invited to give evidence to the House of Commons Science and Technology Committee on the 5th February 2014. You can watch his evidence at www.parliamentlive.tv/Main/Player.aspx?meetingId=14839
To date (March 2014) there have been two more evidence hearings:
- 26th March 2014 – awaiting upload
You can find out more about vCJD at www.who.int/mediacentre/factsheets/fs180/en/
and about this inquiry at www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/news/131203-blood-tissue-and-organ-screening-tor/
- Department of Health, Social Services and Public Safety: Northern Ireland consultation on a ‘Review of Paediatric Healthcare Services Provided in Hospitals And In The Community’
In January 2014 Immunodeficiency UK responded to this review of healthcare services for children and young people in Northern Ireland. The purpose of the review was to produce recommendations which will provide a strategic direction for the future development and enhancement of healthcare services in relation to the interface between hospital and community services for children and young people (from 0-18 years) over the next ten years starting from 2014.
You can read Immunodeficiency UK’s response to this consultation here.
- Consultation on UK Implementation of Directive on Patients’ Rights in Cross-border Healthcare
In May 2013, Immunodeficiency UK responded to the public consultation on this directive regulating patients to seek diagnosis, treatment or care in a different European country.
Our response to the consultation can be downloaded here.
The government’s response can be found here.
According to this new piece of European legislation, patients should be entitled to seek a diagnosis, treatment or care when this is not available in their Member State within a reasonable period of time (to be defined individually by each Member State). The law recognises the special importance that this will have for rare diseases, where knowledge and expertise is scattered throughout the European Union.
In order to have clear and transparent information on what are patients entitled to access, the legislation establishes the need for national governments to create National Contact Points in their territory. These contact points should provide information to all patients requesting the following information:
- National contact points in the Member State of treatment: information regarding healthcare providers, including information on a specific providers’ right to provide services, information on patients’ rights, complaints procedures, etc.
- National contact points in the Member State of affiliation: information regarding the rights and entitlements to receiving cross-border healthcare, especially regarding the terms and conditions for reimbursement of costs.
This means any citizen is entitled to get in touch with these contact points to get information on his/her rights to receive treatment abroad. The national contact points are due to provide information to citizens and assist them in the process of informing themselves about treatment options abroad.
- Supporting implementation of a UK newborn screening programme for severe combined immunodeficiency (SCID)
In January 2013, Immunodeficiency UK responded to the public consultation exercise launched by the UK National Screening Committee in support of the case for implementing a newborn screening programme for SCID within the UK.
You can access the policy under review here and read our response to the consultation here.
The government’s subsequent response is here.
Professor Gaspar, a member of the Immunodeficiency UK medical panel and professor of paediatrics and immunology at the University College of London, is heading the campaign to implement this much-needed screening programme for SCID so that children’s lives can be saved through early medical treatment.
- Consultation on service specifications and clinical policies for specialised services in the new NHS in England
In late 2012 the NHS Commissioning Board launched a consultation on the specialised services it will directly commission in the new commissioning year beginning in April 2013. Immunodeficiency UK responded to the consultation, offering comment on:
- Service B9a – Specialised Immunology Clinical Services
- Service E3d – Paediatric Medicine: Specialised Paediatric Immunology and Infectious Disease Services
- B9b Allergy – Specialised Allergy Services: Adults
- B9a2 – Clinical Commissioning Policy for Hereditary Angioedema.
Our response to the consultation can be downloaded here.