Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what assessment he has made of the adequacy of help and support available to people with Huntington's disease.
Answered by Baroness Blackwood of North Oxford
Adult specialised neuroscience services, including those for people with complex neurological issues, some of which will relate to Huntington’s disease, are commissioned by NHS England’s specialised commissioning teams. However, a large part of the care that Huntington’s patients require will be accessed through local hospital and general practitioner (GP) services. These services are funded by local clinical commissioning groups and as such are not specialised services.
Patients with Huntington’s disease have access to a range of services including their GP, associated health professionals neurology services, occupational therapy, speech and language therapy and local mental health services. Additional resources, information and advice are available through patient organisations such as the Huntington’s Disease Association.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what steps he is taking to encourage the development of treatments for Huntington's disease.
Answered by Baroness Blackwood of North Oxford
The Government, through the National Institute for Health Research (NIHR), has established the Rare Diseases Translational Research Collaboration (TRC) with an initial investment of £20 million over four years. The Rare Disease TRC provides world-class National Health Service research infrastructure to support fundamental discoveries and translational research on rare diseases; increasing research collaboration to lead to improved diagnosis, treatment and care, and to support deep phenotyping of people with rare diseases.
The NIHR funds research infrastructure to translate developments in pre-clinical research in neurological conditions, including Huntington’s disease, into benefits for patients including new treatments. This infrastructure includes the NIHR University College London Hospitals Biomedical Research Centre.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what recent estimate he has made of the number of people in the UK affected by each strand of the hepatitis virus.
Answered by Baroness Blackwood of North Oxford
Public Health England receives laboratory reports of confirmed cases of hepatitis A, C and E from England and Wales and from England for hepatitis B.
In 2014, 300 reports were received for hepatitis A, 488 for hepatitis B, 11,997 for hepatitis C and 886 for hepatitis E.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what discussions he has had with NICE about the effectiveness of guidelines to tackle urinary tract infections that are (a) acute and (b) chronic.
Answered by Baroness Blackwood of North Oxford
No such discussions have taken place.
The National Institute for Health and Care Excellence (NICE) published a clinical guideline on Urinary tract infection in under 16s: diagnosis and management (CG54) in August 2007. NICE has also published Quality Standards on Urinary tract infection in children and young people (QS36) in July 2013 and Urinary tract infections in adults (QS90) in June 2015.
NICE periodically reviews its technology appraisal methods and processes to ensure that they remain appropriate in the light of wider developments.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what steps he is taking to improve the accuracy of diagnosing chronic urinary tract infections.
Answered by David Mowat
Urinary tract infections (UTIs) are caused by the presence and multiplication of microorganisms in the urinary tract.
The National Institute for Health and Care Excellence (NICE) publishes quality standards to define clinical best practice for the diagnosis and treatment of conditions.
The NICE published the Urinary tract infections in adults quality standard in June 2015. The quality standard comprises of quality statements concerning the diagnosis, treatment and management of UTIs. Quality statement 1 and 2 offer specific guidance on ensuring more accurate diagnoses of UTIs in adults.
The guidance is available at: www.nice.org.uk/guidance/qs90
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, whether he has had representations on the research conducted by Professor Malone-Lee and University College London researchers on the effectiveness of the standard NHS tests for diagnosing urinary tract infections.
Answered by David Mowat
A search of the Department’s ministerial correspondence database has identified 12 items of correspondence received since 1 January 2016 about the research conducted by Professor Malone-Lee and University College London researchers on the effectiveness of the standard National Health Service tests for diagnosing urinary tract infections. This is a minimum figure which represents correspondence received by the Department’s ministerial correspondence unit only.
NHS commissioners are responsible for making decisions on individual treatments on the basis of the available evidence, taking into account guidance from the National Institute for Health and Care Excellence (NICE) where available. NICE guidance is always evidence based, assuring us of the latest clinical thinking and research to determine the best treatment for patients.
NICE quality standards for urinary tract infections can be found here:
https://www.nice.org.uk/guidance/qs90
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what data is held by local authorities on suspected abuse of the elderly by social carers.
Answered by Alistair Burt
The Health and Social Care Information Centre (HSCIC) collects national level data on older adult safeguarding and reports annually. The Safeguarding Adults Collection (formally the Safeguarding Adults Return) presents information about adults at risk for whom safeguarding referrals were opened during the reporting period, and case details for safeguarding referrals which concluded during the reporting period. A safeguarding referral is where a concern is raised with a council about a risk of abuse, which instigates an enquiry under the local safeguarding procedures. The data collection captures the source of harm including where this comes from social care support. Further details regarding the collection can be found on the HSCIC website at:
http://www.hscic.gov.uk/socialcarecollections2016
Local authorities will collect a range of safeguarding intelligence which the Department has not been prescriptive in setting out. However, the Government has made it clear in statutory guidance to support implementation of the Care Act (2014) that Safeguarding Adults Boards (SABs) must establish ways of analysing and interrogating data on safeguarding notifications that increase the SABs understanding of prevalence of abuse and neglect locally and that builds up a picture over time. Local authorities, the NHS and the Police are all core statutory partners on SABs.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what steps he is taking to tackle suspected abuse of the elderly by social carers.
Answered by Alistair Burt
The Government is committed to preventing and reducing the risk of harm to older adults in vulnerable situations regardless of the source of harm.
The Care Act (2014) placed adult safeguarding on a statutory footing for the first time and provided local authorities with the lead on responding to, and preventing, abuse and neglect. Supported by a new duty of cooperation by other relevant agencies, set out in the Act, it has been made clear that safeguarding is everyone’s business. The statutory guidance to the Act sets out an expectation that local authorities ensure that the services they commission are safe, effective and of high quality. It also makes clear that those providing the service, local authorities and the Care Quality Commission take swift action where anyone alleges poor care, neglect or abuse.
Behaviour which amounts to abuse and neglect often constitutes specific criminal offences. Although the local authority has the lead role in making enquiries, where criminal activity is suspected, then the early involvement of the police is likely to be appropriate in many cases, and that is what we would want to see.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what recent discussions he has had with NHS England about making Translarna available for use in England.
Answered by George Freeman
National Health Service funding decisions for treatments for rare and ultra-rare conditions, such as Translarna (ataluren) for Duchenne muscular dystrophy (DMD), are made by NHS England, as the responsible commissioner for specialised services.
I have been working with the National Institute for Health and Care Excellence (NICE) and NHS England to understand and expedite what can be done to help people access Translarna and have met with MPs, patient groups, drug companies, and parents of children with rare diseases, including DMD, to discuss their concerns about this specific issue.
Following stakeholders’ concerns regarding NHS England’s evaluation processes of treatments for rare conditions, NHS England decided in December 2014 to hold a 90-day consultation on prioritisation for specialised services (held from 27 January to 27 April 2015). This was to ensure that the principles and process for making such decisions were well informed, evidence-led and in line with the expectations of patients and the public.
The Department and the NICE took steps to ensure that Translarna was referred to the NICE as quickly as possible (March 2015) so that final guidance would be available without undue delay. NHS England announced in July that it would wait until the NICE’s guidance was available before developing a funding policy on Translarna.
On 15 April 2016, the NICE announced in its final draft guidance that it was recommending Translarna (ataluren) for the treatment of children aged five and over with DMD caused by a nonsense mutation.
Translarna was recommended only when a) the company provides it at a discounted price to the NHS under the patient access scheme agreed with the Department and b) NHS England and the manufacturer, PTC Therapeutics, in conjunction with patient representatives, agree a managed access agreement setting out (i) the criteria for starting and stopping treatment, which individual patients would be required to agree, (ii) data collection to address considerable uncertainty in the evidence base and (iii) additional confidential financial controls between the company and NHS England.
On 4 May 2016, the NICE announced that it was allowing extra time for further discussions on access arrangements for Translarna to take place before its final guidance is published. NHS England and PTC Therapeutics have been asked to reach agreement on the cost of the drug to the NHS by 7 July 2016.
If the NICE’s final guidance recommends Translarna, NHS England will be legally required to fund it.