NHS England

Department of Health and Social Care – Review of the National Autism Strategy ‘Think Autism’: call for evidence

In April 2014 the government published Think Autism, a strategy for meeting the needs of autistic adults in England. This year the Department of Health and Social Care, working with the Department for Education, will review the strategy and extend it to cover children as well as adults. The results of this consultation will be used to find out where people think progress has been made and where more needs to be done in the future.

The closing date for comments is 16 May 2019.

Web link: https://www.gov.uk/government/consultations/review-of-the-national-autism-strategy-think-autism-call-for-evidence

New patient reps for National Neuro Advisory Group

Two new patient reps have been elected to sit on the National Neuro Advisory Group, for a period of two years: Chris James, Director of External Affairs at the Motor Neurone Disease Association, and Chloe Haywood, UK Acquired Brain Injury Forum Executive Director. They replace Genevieve Edwards, the MS Society’s External Affairs Director, and Val Buxton, from Parkinson’s UK, who had come to the end of their terms.

Rare disease subgroup – National Neurological Alliance

The most recent rare diseases subgroup meeting included a Q&A with Adrian Williams, Chair of the Neurosciences Clinical Reference Group.

Topics discussed included how the barriers to telehealth/virtual appointments for people with rare diseases can be overcome (include tariff based objections), and ensuring the draft neurology service specification will result in services that meet the needs of patients with rarer conditions. This includes the possibility of using the spec to ensure neurologists signposting patients to appropriate information. Other recent activities for the group include contacting benefits assessment providers about information for assessors on rare neurological disease, and exploring how to support The Genetic Alliance’s work.

NHS Neurosciences Clinical Reference Group reconfiguration

The National Neuro Alliance has been notified of proposed changes to NHS England’s specialised commissioning clinical reference groups. These include reducing the number of clinical representatives – removing regional representation – and reducing the number of patient public voice reps (from 3 to 2, except in exceptional circumstances).

There is also a proposition to merge the specialised pain CRG into the neuroscience CRG.

The NA responded to the consultation, raising concerns about the the potential dilution in patient voice, the reduction in clinical input across both pain and neurosciences, and the increased workload that would result from the merger.

CCG/STP mini audit

The National Neurological Alliance received an FOI response from NHS England highlighting that just 37 of 195 CCGs have submitted NHS RightCare delivery plans that include a focus on neurological problems for their improvement projects.

They are now actively considering how to influence STPs to focus more on neurology, including potential funding and resources for future influencing work.

Public Accounts Committee: report on the interface between health and adult social care

This report concludes that the government still lacks an effective overall strategy or plan to achieve its long-held aim to integrate the health and adult social care sectors. It calls for the government to set out a costed 10-year plan for social care to go with its 10-year NHS plan.


Patients in special circumstances will now be able to access medicinal cannabis, after a decision by the Home Office to reschedule cannabis-based products for medicinal use. This follows an outcry earlier this year relating to children with treatment-resistant epilepsy being denied access to the cannabis oil which had been helping to control their seizures. See website update.

Living Better Longer

This document sets out the government’s vision for putting prevention at the heart of the nation’s health.

The document sets out the government’s vision for:

  • stopping health problems from arising in the first place
  • supporting people to manage their health problems when they do arise

The goal is to improve healthy life expectancy by at least 5 extra years, by 2035, and to close the gap between the richest and poorest.

collection of case studies has been published, showing examples of good practice in preventing health problems from happening.

Published 5 November 2018

NHS Continuing healthcare briefing

NHS continuing healthcare is a package of care arranged and funded solely by the NHS to meet physical and/or mental health needs that have arisen because of disability, accident or illness. Eligibility decisions for NHS continuing healthcare rest on whether someone’s need for care is primarily due to health needs. For example, people who are eligible may have complex medical conditions that require highly specialised nursing support.

As services provided by the NHS are free, whereas those arranged by local authority social services are means tested, the outcome of any decision as to who has responsibility for providing care can have significant financial consequences for the individual concerned. A separate Library briefing paper, Financing care home charges(SN01911), is designed to help answer constituents’ queries about the local authority means-test for care home charges.

Following concerns about the local criteria used for making decisions about eligibility for NHS continuing healthcare, and challenges to the legality of individual eligibility decisions in the courts, in 2007 the Department of Health issued a National Framework for NHS Continuing Healthcare. This Framework was intended to improve the consistency of approach taken by local NHS bodies by providing a common framework for decision making and the resolution of disputes. The latest version of this Framework was published in March 2018 and will be in operation from 1 October 2018.

This briefing paper provides a summary of the key areas within the National Framework and other important Department of Health and Social Care documents. Links to these documents, and briefings from other organisations, can be found at the end of this note. The official guidance should be consulted for a fuller account of the rules and duties that apply to NHS bodies responsible for determining eligibility for NHS continuing healthcare.

Clinical Commissioning Groups are responsible for commissioning NHS continuing healthcare in England, although NHS England also has commissioning responsibilities for some specified groups of people (for example, prisoners and military personnel).

NHS continuing healthcare in England was recently the subject of a report authored by the National Audit Office, published in July 2017, as well as an inquiry undertaken by the Public Accounts Committee, which reported in January 2018.  Both these reports were critical in particular of the difficulties experienced by individuals in accessing NHS continuing healthcare.  In its response, published in March 2018, the Government accepted many of these criticisms and set out further work to improve the accessibility and efficacy of the current system and its processes.  This briefing paper details the findings and recommendations of these reports, as well as the Government’s response to them.

A separate Library briefing paper, Background to the National Framework for NHS Continuing Healthcare (SN04643) provides an account of the preceding guidance and case law.

Commons Briefing papers SN06128

Authors: Tom Powell; Andrew Mackley

Topic: Health services