Asked by: Julian Knight (Independent - Solihull)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to encourage organ donation.
Answered by Jackie Doyle-Price
I refer the hon. Member to the answer I gave to the hon. Member for Solihull on 9 April 2019 to Question 240020.
A number of steps are being taken, including the implementation of the UK-wide ‘Taking Organ Transplantation to 2020’ Strategy (2013); the introduction of the Organ Donation (Deemed Consent Act) 2019 from 2020 which will introduce a new system of consent for organ and tissue donation in England; a 12-month communication campaign, launched by NHS Blood and Transplant on 25 April 2019, to raise awareness of these changes and the options available under the new system; and, from 2020, teaching of the science relating to blood, organ and stem cell donation in all state-funded primary and secondary schools.
Shortages of organs for transplant are relevant to people from all backgrounds but are particularly acute for black, Asian and minority ethnic (BAME) patients, who are more likely to need an organ transplant. It is for this reason the Department launched a campaign in July 2018, delivered by NHS Blood and Transplant, with support from the National Black, Asian, Mixed Race and Minority Ethnic Transplant Alliance, to raise awareness and break down barriers to donation within these communities. A Community Investment Scheme was also launched and in January 2019, 25 projects were successful in sharing £140,000 in funding to break down myths and barriers and increase support for organ donation among BAME communities. Organisations representing Jain, Sikh, Hindu, Muslim, Swahili, black and Asian Christians, black African and Caribbean and multi-faith groups received funding for their projects.
A toolkit is available to help hon. Members engage locally which includes details of the resources available to support such engagement. This is available at the following link:
Asked by: Tanmanjeet Singh Dhesi (Labour - Slough)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to engage with BAME communities on stem cell donations.
Answered by Jackie Doyle-Price
Since 2011 the Department has provided more than £26 million in financial support to NHS Blood and Transplant and Anthony Nolan to enable the establishment of a unified United Kingdom Stem Cell Registry and improve stem cell donation. This includes improving equity of access to unrelated donor stem cell transplantation for Black African Minority Ethnic (BAME) patients through targeted recruitment to the UK Stem Cell Registry and the Department has set specific targets about the proportion of donors that must be from BAME backgrounds.
Asked by: Rosie Cooper (Labour - West Lancashire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, why my constituent’s stem cell treatment for MS has been halted due to NHS England’s decision to no longer allow GPs to refer patients for the treatment.
Answered by Caroline Dinenage
NHS England first published its commissioning policy in 2013, revised in 2015, which permits access to autologous haematopoietic stem cell transplant (HSCT) as a clinical option for some patients with multiple sclerosis (MS). The commissioning policy is available at the following link:
As with any HSCT there are risks to the procedure and when considering this treatment for patients with MS the balance of risk and benefit must be carefully assessed for each patient. Neurologists and transplant doctors in the United Kingdom are guided by the recommendations of the European Society for Blood and Marrow Transplantation, published in 2012, and the guidance of the British Society of Blood and Marrow Transplantation when considering the suitability of transplant. These criteria restrict the use of autologous HSCT to a small group of MS patients with high levels of inflammatory activity despite one or more approved disease modifying therapies and very rare patients with 'malignant' forms of MS. Patients should be assessed by both MS and transplant specialists.
Neurologist and transplant doctors should be guided by these recommendations and decisions related to a patient’s care are a matter for clinicians.
Asked by: Rosie Cooper (Labour - West Lancashire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, for what reason Ms Helen Townsend’s Stem Cell treatment for MS was halted part way through as a result of NHS England's decision that GPs can longer refer people for the treatment and that patients must now be referred by a MS Neurology Specialist.
Answered by Caroline Dinenage
NHS England first published its commissioning policy in 2013, revised in 2015, which permits access to autologous haematopoietic stem cell transplant (HSCT) as a clinical option for some patients with multiple sclerosis (MS). The commissioning policy is available at the following link:
As with any HSCT there are risks to the procedure and when considering this treatment for patients with MS the balance of risk and benefit must be carefully assessed for each patient. Neurologists and transplant doctors in the United Kingdom are guided by the recommendations of the European Society for Blood and Marrow Transplantation, published in 2012, and the guidance of the British Society of Blood and Marrow Transplantation when considering the suitability of transplant. These criteria restrict the use of autologous HSCT to a small group of MS patients with high levels of inflammatory activity despite one or more approved disease modifying therapies and very rare patients with 'malignant' forms of MS. Patients should be assessed by both MS and transplant specialists.
Neurologist and transplant doctors should be guided by these recommendations and decisions related to a patient’s care are a matter for clinicians.
Asked by: Rosie Cooper (Labour - West Lancashire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the effect of NHS England’s decision not to allow GPs to refer patients for Stem Cell treatment for MS on (a) patient health and (b) West Lancashire constituent Ms Townsend's (i) halted treatment and (b) recovery.
Answered by Caroline Dinenage
NHS England first published its commissioning policy in 2013, revised in 2015, which permits access to autologous haematopoietic stem cell transplant (HSCT) as a clinical option for some patients with multiple sclerosis (MS). The commissioning policy is available at the following link:
As with any HSCT there are risks to the procedure and when considering this treatment for patients with MS the balance of risk and benefit must be carefully assessed for each patient. Neurologists and transplant doctors in the United Kingdom are guided by the recommendations of the European Society for Blood and Marrow Transplantation, published in 2012, and the guidance of the British Society of Blood and Marrow Transplantation when considering the suitability of transplant. These criteria restrict the use of autologous HSCT to a small group of MS patients with high levels of inflammatory activity despite one or more approved disease modifying therapies and very rare patients with 'malignant' forms of MS. Patients should be assessed by both MS and transplant specialists.
Neurologist and transplant doctors should be guided by these recommendations and decisions related to a patient’s care are a matter for clinicians.
Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when haematopoietic stem cell transplantation treatment will be made available on the NHS for people with multiple sclerosis.
Answered by Caroline Dinenage
NHS England has a published commissioning policy which permits access to autologous haematopoietic stem cell transplant as a clinical option for some patients with multiple sclerosis (MS) who have been clinically assessed as eligible by transplant and MS specialists taking into account risks and benefits. The commissioning policy is available at the following link:
Asked by: Baroness Walmsley (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government whether they have made any medium to long-term horizon scanning assessment concerning medical research advances in transplantation of material of human origin in the UK and worldwide.
Answered by Lord O'Shaughnessy
NHS Blood and Transplant (NHSBT) is directed by the Secretary of State for Health and Social Care to conduct or commission research into organ donation and transplantation and into the uses, or development, of stem cells and tissues.
NHSBT’s Research, Innovation and Novel Technologies Advisory Group monitors research programmes that require access to donated human material where consent has been given for research. Members of the group include leading researchers who cover all aspects of transplantation. The group also has representation from the British Transplantation Society.
The National Institute for Health Research (NIHR), funded by the Department, also has an important role. The NIHR Biomedical Research Centre has a research theme on Transplantation and Regenerative Medicine which aims to improve outcomes in solid organ transplantation and the use of clinical advances to support the development of cell based therapies. The NIHR Innovation Observatory is a national medical horizon scanning facility which identifies technologies up to 10 years from being publicly available.
Asked by: Colleen Fletcher (Labour - Coventry North East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to encourage (a) men aged 16-30 and (b) people from black, Asian or minority ethnic backgrounds to sign up to the stem cell donor register.
Answered by Jackie Doyle-Price
Young people play a pivotal role in the stem cell landscape. Research has identified that younger donors offer the potential for better patient outcomes and a greater chance of survival. In 2017, 82% of people who were selected to donate their stem cells were male, and 58% were men aged 30 and under. In acknowledgement of this fact, the Department provides funding to Anthony Nolan and NHS Blood and Transplant to support recruitment of young male donors. In 2017 69% of new potential donors recruited to the United Kingdom registry were under the age of 30, and 40% of new potential donors were male.
The Department also funds Anthony Nolan and NHS Blood and Transplant to improve equity of access to unrelated donor stem cell transplantation for Black, Asian and Minority Ethnic (BAME) patients through targeted recruitment to the Anthony Nolan and the NHS Stem Cell Registry.
The Department has provided more than £26 million to NHS Blood and Transplant and Anthony Nolan for stem cell donation since 2011 and have set very specific targets about the proportion of donors that must be from BAME backgrounds; for example, in this financial year, Anthony Nolan will continue to target more than 35% of the umbilical cords stored in the UK Cord Blood Bank to be donated by mothers from BAME backgrounds.
Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to encourage (a) men aged 16-30 and (b) people from black, Asian and ethnic minority backgrounds to register as stem cell donors.
Answered by Matt Hancock
Young people play a pivotal role in the stem cell landscape. Research has identified that younger donors offer the potential for better patient outcomes and a greater chance of survival. In 2017, 82% of people who donated their stem cells were male, and 58% were men aged 30 and under. In acknowledgement of this fact, the Department provides funding to Anthony Nolan and NHS Blood and Transplant (NHSBT) to support recruitment of young male donors.
In 2017 69% of new potential donors recruited to the United Kingdom registry were under the age of 30, and 40% of new potential donors were male.
The Department also funds Anthony Nolan and NHSBT to improve equity of access to unrelated donor stem cell transplantation for Black, Asian, Minority and Ethnic (BAME) patients through targeted recruitment to the Anthony Nolan and the NHS Stem Cell Registry.
The Department has provided more than £26 million to NHSBT and Anthony Nolan for stem cell donation since 2011 and have set very specific targets about the proportion of donors that must be from BAME backgrounds; for example, in this financial year, Anthony Nolan will continue to target more than 35% of the umbilical cords stored in the UK Cord Blood Bank to be donated by mothers from BAME backgrounds.
Asked by: Catherine West (Labour - Hornsey and Wood Green)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that children with Neuroblastoma have access to the most effective (a) treatments and (b) drugs.
Answered by Steve Brine
Current treatments for high-risk neuroblastoma include chemotherapy, radiotherapy, stem cell transplantation, surgery and isotretinoin. Dinutuximab beta gained marketing authorisation in May 2017 and is used in combination with interleukin-2 (aldesleukin) as an additional treatment option for patients who have high-risk neuroblastoma and have shown some improvement with previous treatments or with relapsed or refractory neuroblastoma.
The National Institute for Health and Care Excellence (NICE) published final draft technology appraisal guidance on 12 July that recommends dinutuximab beta as a clinically and cost-effective use of National Health Service resources for patients meeting specified clinical criteria. Stakeholders now have an opportunity to appeal NICE’s draft recommendations. NICE expects to publish final guidance in August 2018.
Ministers and Departmental officials regularly discuss a range of issues with colleagues in NHS England and NICE, including the availability of individual treatments.