Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what policies NHS England has adopted for the funding of everolimus for patients with tuberous sclerosis.
Answered by Earl Howe - Deputy Leader of the House of Lords
NHS England has advised that decisions on which specialised services and treatments to invest in are based on an assessment of their effectiveness following clinical trials or other evidence of effectiveness, taking into account the views of expert clinicians and other stakeholders.
Over the coming weeks, the six Programmes of Care that are responsible for advising NHS England on specialised services will be drawing up the work programme for 2015-16, which will include developing a number of policies, including ones for the provision of everolimus for tuberous sclerosis for complex related renal angiomyolipoma and everolimus for Subependymal Giant Cell Astrocytoma.
In the meantime, NHS England does not routinely commission everolimus for the treatment of tuberous sclerosis, although it will consider funding it in exceptional clinical circumstances. Clinicians can submit individual funding requests for this treatment to us on behalf of their patients.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what discussions they have had with NHS England about improving pancreatic survival rates.
Answered by Earl Howe - Deputy Leader of the House of Lords
NHS England recently committed a further £15 million over three years to evaluate and treat patients with a modern, more precise type of radiotherapy, stereotactic ablative radiotherapy (SABR). This evaluation programme will mean a significant increase in the number of cancer patients eligible to access SABR treatment by around 750 a year. The programme will widen the number of cancers being treated by SABR, including cancer that has spread to another part of the body. This new investment is in addition to NHS England’s pledge to fund up to £6 million over the next five years to cover the National Health Service treatment costs of SABR clinical trials, most of which are being led by Cancer Research UK. One of these trials is for pancreatic cancer.
Regarding cancer drugs, the National Institute for Health and Care Excellence (NICE) has recommended gemcitabine as a treatment option for pancreatic cancer in technology appraisal guidance published in May 2001, subject to certain clinical criteria, and has been asked to appraise a number of other pancreatic cancer drugs. Where a pancreatic cancer drug is not routinely available on the NHS, patients may be able to access it through the Cancer Drugs Fund (CDF). There is one anti-cancer therapy available through the CDF that is used in pancreatic cancer, Albumin bound Paclitaxel (Abraxane).
More generally on treatment, NHS England’s pancreatic cancer service specification clearly defines what it expects to be in place for providers to offer evidence-based, safe and effective pancreatic cancer services. This service specification has been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe core and developmental service standards. In addition, a pancreatic cancer clinical guideline and quality standard have been referred to NICE by NHS England.
Other action is also ongoing to improve cancer survival rates, including for pancreatic cancer, which we know can be particularly difficult to detect and diagnose. In January 2015, NHS England launched a major early diagnosis programme, working jointly with Cancer Research UK and Macmillan Cancer Support to test new approaches to identifying cancer more quickly. These include: offering patients the option to self-refer for diagnostic tests; lowering the threshold for general practitioner (GP) referrals; creating a pathway for vague symptoms like tiredness; and setting up multi-disciplinary diagnostic centres so patients can have several tests done at the same place on the same day. NHS England’s aim is to evaluate these innovative initiatives across more than 60 centres around England to collect evidence on approaches that could be implemented from 2016-17.
In 2013, Macmillan Cancer Support, partly funded by the Department, piloted an electronic cancer decision support tool, which includes pancreatic cancer, for GPs to use in their routine practice. It is designed to help GPs recognise the symptoms of cancer and identify patients that they might not otherwise refer urgently for suspected cancer. The system is currently installed in over 1,000 GP practices, and Macmillan Cancer Support is working in partnership with companies supplying GP information technology systems to develop versions of this software to make it available to all GPs as part of their standard software offer.
The Department has regular meetings with NHS England on improving cancer survival rates, including for pancreatic cancer.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what measures they are taking to ensure that patients with pancreatic cancer can gain access to the latest and most effective treatments.
Answered by Earl Howe - Deputy Leader of the House of Lords
NHS England recently committed a further £15 million over three years to evaluate and treat patients with a modern, more precise type of radiotherapy, stereotactic ablative radiotherapy (SABR). This evaluation programme will mean a significant increase in the number of cancer patients eligible to access SABR treatment by around 750 a year. The programme will widen the number of cancers being treated by SABR, including cancer that has spread to another part of the body. This new investment is in addition to NHS England’s pledge to fund up to £6 million over the next five years to cover the National Health Service treatment costs of SABR clinical trials, most of which are being led by Cancer Research UK. One of these trials is for pancreatic cancer.
Regarding cancer drugs, the National Institute for Health and Care Excellence (NICE) has recommended gemcitabine as a treatment option for pancreatic cancer in technology appraisal guidance published in May 2001, subject to certain clinical criteria, and has been asked to appraise a number of other pancreatic cancer drugs. Where a pancreatic cancer drug is not routinely available on the NHS, patients may be able to access it through the Cancer Drugs Fund (CDF). There is one anti-cancer therapy available through the CDF that is used in pancreatic cancer, Albumin bound Paclitaxel (Abraxane).
More generally on treatment, NHS England’s pancreatic cancer service specification clearly defines what it expects to be in place for providers to offer evidence-based, safe and effective pancreatic cancer services. This service specification has been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe core and developmental service standards. In addition, a pancreatic cancer clinical guideline and quality standard have been referred to NICE by NHS England.
Other action is also ongoing to improve cancer survival rates, including for pancreatic cancer, which we know can be particularly difficult to detect and diagnose. In January 2015, NHS England launched a major early diagnosis programme, working jointly with Cancer Research UK and Macmillan Cancer Support to test new approaches to identifying cancer more quickly. These include: offering patients the option to self-refer for diagnostic tests; lowering the threshold for general practitioner (GP) referrals; creating a pathway for vague symptoms like tiredness; and setting up multi-disciplinary diagnostic centres so patients can have several tests done at the same place on the same day. NHS England’s aim is to evaluate these innovative initiatives across more than 60 centres around England to collect evidence on approaches that could be implemented from 2016-17.
In 2013, Macmillan Cancer Support, partly funded by the Department, piloted an electronic cancer decision support tool, which includes pancreatic cancer, for GPs to use in their routine practice. It is designed to help GPs recognise the symptoms of cancer and identify patients that they might not otherwise refer urgently for suspected cancer. The system is currently installed in over 1,000 GP practices, and Macmillan Cancer Support is working in partnership with companies supplying GP information technology systems to develop versions of this software to make it available to all GPs as part of their standard software offer.
The Department has regular meetings with NHS England on improving cancer survival rates, including for pancreatic cancer.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government, further to the Written Answer by Earl Howe on 10 February (HL4453), what plans they have to encourage NHS Trusts to employ and re-employ experienced medical staff who wish to practice part-time towards the end of their careers.
Answered by Earl Howe - Deputy Leader of the House of Lords
It is for local National Health Service organisations to decide how many and what staff they employ, and they are best placed to do this based on the needs of their patients and local communities.
Health Education England (HEE) is responsible for ensuring the NHS workforce has the right numbers, skills, values and behaviours to meet the needs of patients.
HEE will work with NHS Employers and other key partners to develop a more strategic and cost-effective approach to staff retention including the encouragement of greater employer focus on retaining and investing in their current staff.
To support nursing workforce requirements, HEE announced on 29 September 2014 that it is putting £4.7 million into training resources over the next three years as part of a major national campaign that will allow former nurses to return to the workforce.
Over 1,000 have entered Return to Practice programmes this year. These programmes fast track experienced nurses back into the NHS in 3-6 months, compared to 3-4 years training new nurses.
HEE is working with NHS England, the British Medical Association and the Royal College of General Practitioners to standardise a funded scheme which allows general practitioners to return to United Kingdom general practice following a career break. This is anticipated to be launched at the end of March.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what assessment they have made of the recent closing of the acute dermatological services at Nottingham University Hospital Trust and the impact it has had on the dermatology services to in-patients with acute medical and surgical conditions and on training capacity in the East Midlands.
Answered by Earl Howe - Deputy Leader of the House of Lords
The provision of services, including dermatology services, is a matter for the local National Health Service.
We are advised by the NHS Trust Development Authority that Nottingham University Hospitals NHS Trust has worked with commissioners to ensure a satisfactory service is available to local people from alternative providers and the Trust will continue to provide an out of hours service for its inpatients and those patients requiring emergency treatment.
Rushcliffe Clinical Commissioning Group has commissioned a review to assess what is needed to meet the needs of the population in the future.
This Government established Health Education England to co-ordinate education and training activity across the NHS, including the management of training programmes for junior doctors. Health Education England and the Local Education and Training Board in the East Midlands are best placed to work with local employers in Nottingham to understand and manage the impact of changes.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what is the total number of staff employed by NHS England, their grades and their total cost.
Answered by Earl Howe - Deputy Leader of the House of Lords
The total number of whole time equivalent (WTE) staff employed by NHS England as of November 2014 is 5605.47 and their total cost for 2014-15 is £312,897,165. The split by grade can be seen in the following table.
Salary Band | Worked WTE paid in Nov-14 | Actual Apr to Nov and estimate Dec 14 to Mar 15 £ |
Admin & Clerical band 2 | 373.70 | 7,964,906 |
Admin & Clerical band 3 | 424.80 | 10,239,492 |
Admin & Clerical band 4 | 591.76 | 15,162,179 |
Admin & Clerical band 5 | 376.52 | 11,885,462 |
Admin & Clerical band 6 | 229.14 | 8,938,141 |
Admin & Clerical band 7 | 164.83 | 7,770,548 |
Band 5 | 263.21 | 8,269,730 |
Band 6 | 306.32 | 10,902,343 |
Band 7 | 462.47 | 20,659,007 |
Band 8A | 566.74 | 31,793,887 |
Band 8B | 588.63 | 39,383,822 |
Band 8C | 389.43 | 30,474,862 |
Band 8D | 316.72 | 32,087,072 |
Band 9 | 245.17 | 30,376,967 |
Consultant | 53.35 | 6,267,998 |
General Practitioners | 2.73 | 405,083 |
Locum Speciality Registrar | 0.00 | 32,893 |
Pharmacy band 4 | 1.00 | 22,135 |
Pharmacy band 7 | 1.00 | 48,129 |
Pharmacy band 8A | 0.80 | 40,374 |
Pharmacy band 8C | 1.00 | 60,488 |
Trust Scale (Medical) | 2.94 | 1,077,426 |
Very Senior Managers | 243.21 | 39,034,221 |
Grand Total | 5605.47 | 312,897,165 |
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what discussions they have had with NHS England about improving the process involved in assessing medicines used for treating rare diseases as described in the recent Genetics Alliance UK Patient Charter <i>Patients and Priorities of NHS England's commissioning of medicines for rare diseases</i>.
Answered by Earl Howe - Deputy Leader of the House of Lords
NHS England has advised that it is considering the recommendations in the Patient Charter which was published by Genetic Alliance UK on 21 October 2014.
NHS England is working with stakeholders to review the process through which it develops commissioning policies. NHS England is also considering whether it may be appropriate to reduce the usual 12-week consultation period where a technology affects a very small number of patients who have been actively engaged in developing a commissioning policy and whose views have been taken into account during that development.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what discussions they have had with NHS England about incorporating the views of patients when they are making their decisions about the availability of medicines for the treatment of rare diseases in the National Health Service.
Answered by Earl Howe - Deputy Leader of the House of Lords
There are a variety of ways in which NHS England incorporate patients’ views when they are making decisions about the availability of medicines for the treatment of rare diseases in the NHS.
The Patient and Public Voice Assurance Group (PPVAG) is consulted regarding specialised commissioning matters. The membership is made up of patient and patient group representatives with a lay Chair. The Chair of the PPVAG and another PPVAG representative sit on the Specialised Commissioning Oversight Group to ensure patient and public engagement is considered in making decisions on specialised commissioning.
NHS England also hosts the Rare Diseases Advisory Group (RDAG) that feeds directly in to the Clinical Priorities Advisory Group, which makes recommendations about whether to commission services or treatments. The RDAG receives reports on all new treatments to be offered through specialised services and signs off their evaluation. RDAG has patient representatives from Rare Disease UK and Genetic Alliance UK which represent rare disease patients.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government how many medicines for the treatment of rare diseases the National Institute for Health and Care Excellence has considered; and how many it has approved since it took over responsibility for that function from the Advisory Group on National Specialised Services.
Answered by Earl Howe - Deputy Leader of the House of Lords
The National Institute for Health and Care Excellence (NICE) has been asked to evaluate the following treatments under its highly specialised technologies programme:
Assessment title | Anticipated publication date |
Atypical haemolytic uraemic syndrome - eculizumab | January 2015 |
Gaucher disease (type 1) - eliglustat | August 2015 |
Mucopolysaccharidosis (type IVA) - elosulfase alfa | October 2015 |
Paediatric-onset hypophosphatasia - asfotase alfa | To be confirmed |
NICE has not yet issued any final guidance through this programme.
Asked by: Lord Turnberg (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what encouragement they are giving to the pharmaceutical industry to develop new treatments for patients with rare diseases.
Answered by Earl Howe - Deputy Leader of the House of Lords
The Government continues to implement its Strategy for UK Life Sciences, delivering its long-term programme of action to improve the wider environment for life sciences companies and overcome the barriers that allow discoveries to be translated into new treatments for patients with rare conditions.
We are making substantial investment in infrastructure for research into rare diseases and experimental medicine through the National Institute for Health Research (NIHR).
The NIHR BioResource, launched in March this year, includes a focus on rare diseases where ongoing genotyping of volunteers will speed up research into new treatments.
The NIHR Rare Diseases Translational Research Collaboration, launched alongside the UK Rare Diseases Strategy with an investment of £20 million over four years, is making good progress in developing a better understanding of the physical characteristics of rare diseases and supporting our drive for new diagnostics and treatments for patients with rare diseases.
The 100,000 Genomes Project is focusing on rare diseases and offers the strongest prospect of patient and scientific benefits and the ability to drive the transformation of the National Health Service in terms of application of genomic medicine. Furthermore, the application of whole genome sequencing may enable major new biological insights into the genetic make-up of rare diseases that will, in time, lead to new diagnostics and therapeutic innovation.
In March 2014, we announced the Early Access to Medicines Scheme to support access in the United Kingdom to promising new, unlicensed or off-label medicines in areas of unmet clinical need for patients with life threatening or seriously debilitating conditions without adequate treatment options. The Medicines and Healthcare Products Regulatory Agency has now issued two Promising Innovative Medicines Designations which is the first step of the scheme.
We are also commissioning an external review of the pathways for the development, assessment, and adoption of innovative medicines and medical technology. This review will consider how to speed up access for NHS patients to cost-effective new diagnostics, medicines and devices.