Due to COVID-19 we are not able to send out any resources at this time. If you are a family carer in need of support then please contact our helpline.

All our information sheets are available to download. If you need specific help relating to the COVID-19 pandemic please see our information here: Guidance for Families.

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Covid 19 and learning disabilities latest news

If you are looking for resources and information to help you care and support your family during this time see our Covid – 19 resource and information page.

 

This page summarises what the CBF is doing to support and represent children and adults with severe learning disabilities and their families nationally during the Covid-19 pandemic.

 

May 2020

Data on deaths of children, young people and adults with learning disabilities and/ or autism from Covid 19

Following pressure from people with learning disabilities, families and charities, data has today finally been published on the number of children and adults with learning disabilities and/ or autism who have sadly died due to Covid 19.

NHS

Figures published today by NHS England show 451 people with learning disabilities and/ or autism have died of Covid-19 since 24th March in hospital. 1,020 people receiving treatment for a mental health condition have died since 24th March in hospital. These figures include 76 confirmed deaths from Covid-19 in inpatient settings.  Find the NHS data here.

CQC

Last week the CQC published figures showing that the number of deaths in mental health hospitals has doubled since the same time last year. This figure includes people with learning disabilities and autism. According to the Care Quality Commission 106 deaths were recorded between 1 March and 1 May, compared to 51 in the same period last year in mental health hospitals.

Today CQC published data which shows that between 10 April – 8 May this year, the number of deaths reported across all (CQC registered) settings (such as adult residential care or home care) where people with a learning disability may live was 175% higher than the same period last year (3,765 compared to 1,370 last year). From data currently published we do not know how many of these people had a learning disability.  Find the full CQC article here.  

 

What needs to happen

It is well documented that even before this pandemic people with learning disabilities were at risk of premature and avoidable deaths, often due to failings in the systems which should be there to support them.  The current situation is likely to have exacerbated this risk.

Children and adults with severe learning disabilities are often not able to communicate verbally or easily express pain they are experiencing and might display symptoms differently to the general population. At this time, more than ever, it is essential that all healthcare professionals are aware of the risk of diagnostic overshadowing and regularly consult family members and carers who know the person with learning disabilities and/ or autism very well. It is also important that deaths due to Covid-19 do not mask the deaths of people with learning disability and/ or autism from other causes.

People with learning disabilities and their carers, wherever they are living, need to have access to testing and to PPE.

Regular publication of accurate and transparent data on the deaths of people with learning disabilities must be prioritised and this data must be analysed and acted upon.  CQC should immediately fulfil their commitment to assess how many people with learning disabilities died in adult social care settings.    NHSE must consider the data on deaths in hospitals, and take urgent necessary steps to address the issues that it raises.  Government guidance on supporting people with learning disabilities and autism should be updated to advise local authorities and CCGs about how to promote good healthcare of people with learning disabilities during this pandemic so we do not see unnecessary increases in deaths.

 

BBC Breakfast covered the deaths of people with learning disabilities this morning. You can watch here https://www.bbc.co.uk/iplayer/live/bbcone (report starts at 8.11am)

Find the data from NHS England here: https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-daily-deaths/

Find the article from CQC here: https://www.cqc.org.uk/news/stories/understanding-impact-covid-19-people-learning-disability-or-autism

 

We understand these figures are likely to be distressing for the families of children and adults with learning disabilities and/ or autism.

Please see our website here for resources/ information related to Covid 19 for family carers, including information sheets about going into hospital with Covid-19 and accessing routine healthcare during this period.

Our family support helpline is open for the families of children and adults with severe learning disabilities- 9am-4pm Monday to Friday on 0300 666 0126.

 

Challenge to CQC’s decision to suspend inspections of services

 CBF and 10 other organisations have joined together with law firm Leigh Day to write to CQC to challenge their decision to suspend all inspections of services. See the letter here

 “Our collective view is that now is a time for additional scrutiny where there are known risks, not less. We believe that CQC can and must make arrangements for inspections to check that people are safe in services, their human rights are met, and they are receiving high quality care and support. We hope that CQC will urgently reconsider its decision and make the changes suggested as soon as possible to protect people from harm.”

 

Quote from a family 

“Our daughter is suffering where she is living.  She is in residential care and has lived there for several years.  She has a severe learning disability, Autism and Epilepsy.  We have had ongoing concerns about the quality of our daughter’s care and support.  We have previously reported our concerns about the service to CQC,  they are currently rated as ‘requires improvement’.  We are extremely worried about Covid-19, not only because of the potential health risks posed to our daughter, but also because of the restrictions on family members visiting.  Skype contact is meaningless for our daughter and she does not understand Covid-19 and why she can’t see her family.  There is nothing in place to ensure someone other than the paid provider lays eyes on her and ensures her safety and wellbeing.  Our daughter is non-verbal, therefore, unable to speak up for herself.  An increase in challenging behaviours is her way of communicating her distress at not having her usual family visits and being restricted from going out.  Her self-injurious behaviour has increased markedly.  A different incident occurred, which also resulted in safeguarding and was a result of staff neglecting her high support needs and not keeping her safe.  There has been excessive use of physical restraint and excessive use of PRN medication.  Our family are extremely on edge as we are truly frightened that something will happen to her.  She has been neglected previously in local authority care and family were the ones to raise the safeguarding concerns.  Without family carers seeing their loved ones in the flesh, and no external scrutiny from the CQC or other professional bodies we are left with no option but to trust in a provider and staff team, where we know she is not safe and her needs are not being met.”

 

 

07/05/2020

Children’s Social Care Guidance

Children’s Social Care legislation has been amended until 25 September 2020 (with potential to extend beyond this date). Some of the key changes include:

  • Removal some of the duties relating to children in care, including 6-weekly social worker visits and independent reviews.
  • Children’s homes are not required to have twice-yearly Ofsted inspections or monthly independent visits and the care standards governing quality of care have been amended
  • Care planning safeguards related to short breaks will only apply after 75 days of short breaks within one year.
  • Children’s homes could previously only deprive children of their liberty if they had a court order but can now do so temporarily under the Coronavirus legislation if a child has suspected Covid-19.

 

The Children’s Commissioner has asked for these changes to be revoked immediately and the CBF will be taking steps to challenge this decision. We have produced a summary of all children’s Covid-19 guidance which you can find on our NHS and Government Information Page

 

Testing Eligibility

The Government has provided updated guidance on eligibility for testing which stipulates that unpaid carers are classed as essential workers and are eligible for priority testing. We have had confirmation from DHSC that all residents in registered care homes will be eligible for testing, but those in supported living arrangements are currently not. All carers, whether employed by a registered care provider or not, are eligible for testing. We are challenging the decision to exclude people who live in supported living from testing provision. All Guidance can be read on our Government and NHS Guidance Page.

 

Legal Challenge to CQC

During the pandemic, the Care Quality Commission have stopped all routine inspections. The CBF, along with other charities and groups, have instructed solicitors from Leigh Day to write to the CQC with a pre-action letter challenging the CQC’s decision to stop inspections. The letter highlights the importance of ensuring that abuse and neglect does not remain hidden and suggests a range of actions that could be implemented. You can read our press statement above.

 

 

April 2020

24/04/2020

In the last week there have been several updates to guidance and new information around Covid-19 concerning learning disability and autism. We have been continuing to raise issues of concern with the Government and NHSE. Key updates this week include:

 

Information:

-          The Government has announced plans to provide more Covid-19 testing in social care settings, under an ‘everyone who needs one’ scheme. Currently, there is a lack of clarity around whether this will be provided exclusively to care home staff, or also to care staff in community settings. We have raised this issue with our legal panel and hope to receive a response soon. To see answers from the legal panel on other FAQs please visit our Covid-19 Information Page.

 

-          Last week (on 16th April) the NHS Digital Transforming Care figures for March 2020 were released. These figures showed that the Government had failed to meet its March 2020 target of a 35% reduction in inpatients with learning disabilities and/or autism. We are working to ensure that these missed targets do not go by unnoticed, particularly in light of concerns that the current situation could lead to increased admissions, use of medication, restrictive interventions and further delayed discharges. To view the latest data and CBF and Mencap statement please see here.

 

-          Next week representatives from the CBF will be attending a virtual meeting of The All Party Parliamentary Group (APPG) on Mental Health. This is a group of MPs and peers from all political parties who are interested in mental health. We will be asking the group what the Government is doing to increase support for family-carers of children and adults with severe learning disabilities, to minimise the mental health risks to families and those they care for. We will be highlighting the current risks of increased challenging behaviour and subsequent overmedication, increased admissions to inpatient units, and use of restrictive practices and seclusion. We will also be highlighting the lack of support for families caring for their loved ones at home, and the lack of input to decisions around their loved one’s care that families face when their relative does not live at home.

 

-          Some Local Authorities (LAs) have switched on the Care Act Easements and therefore no longer have to fulfil the same requirements to meet need as under the Care Act, instead LAs can prioritise those with the most urgent need. The guidance for Local Authorities says they should be informing all service users, providers, and carers when the easements are switched on, and a clear process to report and justify this to DHSC needs to be carried out. We are asking DHSC to publish a list of LAs who have initiated the easements and will be asking for clarity around where LAs should announce that they have chosen to do this. Mencap have produced a summary of what the easements mean which you may find useful.

 

Guidance:

-          Publication of Government Guidance on Direct Payments: The CBF have been raising concerns regarding Direct Payments since the start of the coronavirus pandemic. On the 21st April the government published guidance providing some information on how Direct Payments and Personal Health Budgets can be used, including some templates that families may find helpful.

 

-          New Guidance for Local Authorities has been issued, asking them to review all children with an Education, Health or Care Plan. We are in the process of updating our Information during School Closures resource (available on our Covid-19 information page) to reflect this.

 

 

21/04/2020

There is now a great deal of guidance on Covid-19 which can be hard to navigate to find key relevant information.  We have set up a new webpage “NHS and Government guidance” with summaries of the key points and are working in partnership with lawyers and barristers to interpret the guidance and answer your questions...  see our Frequently Asked Questions(FAQs).

 

As the lockdown continues the CBF is working hard to protect the rights and raise the specific needs of children and adults with severe learning disabilities and their families with the Government and NHS England.  We are grateful to all the families and professionals who are keeping us updated on important issues and to all those working alongside us to raise concerns and protect the rights of disabled people.  Key changes this month in response to representations from CBF and others include:

 

  • NICE have amended the critical care guidance to ensure the frailty scale is not used for those with a learning disability or autism.  This should help to ensure equitable access to critical care for people with learning disabilities.
  • NHS England and Improvement have clarified how Do Not Resuscitate (DNR) and Do Not Attempt Resuscitation (DNAR) orders should be applied (not in a blanket fashion).
  • The Department of Health and Social Care have confirmed that people with a learning disability or autism can go out more than once a day and can go beyond their local area.
  • As far as we have been made aware, the changes to the Mental Health Act in the Coronavirus Bill have not yet been “switched on” and guidance will be published when this does happen. CBF and Mencap have had discussions with Government officials to try to ensure that the changes are not detrimental for people with learning disabilities.

 

Please keep us updated with any issues you are facing or questions you need answered and we will continue to hold the Government and NHS England to account with the aim of minimising the risks and distress to people with severe learning disabilities and their families during this difficult time. 

 

March 2020

This is a challenging time for all of us, but especially if you care for a loved one with a severe learning disability and/or autism whose behaviour challenges. It is particularly difficult when faced with uncertainty, additional caring responsibilities, balancing home life, isolation and health concerns.  

The CBF have written to senior officials in Health and Social Care and Education and NHSE to highlight a number of issues and ask for assurances and clarification on how they will ensure the right support is provided during the Coronavirus pandemic. Please see PDF copies of the letters below. 

NHSE

DHSC and Education 

We will continue to keep you updated of progress on this.

Many of you are understandably worried for your loved ones, we have asked these questions so we can provide answers to families.

We are working on providing some practical guidance and information and will share this as soon as we can.

At the CBF we have had to adjust so that staff are working from home, but we are all continuing to work, and our family support service continues to operate to support you.

If you are worried our family support line remains open and can be reached at 0300 666 0126. You can also always email us directly, support@thecbf.org.uk.

  

Updates: 

We have been advised that guidance will be issued on policies for the emergency period which will cover the points in our letter. There will also be guidance on the operation of the emergency legislation specifically around the mental health act.

We will share the guidance as soon as it is available.

 

Lawyers raise serious concerns about current drafting of the emergency Coronavirus Bill. This sets out some initial ideas to amend Schedule 11 of the bill to avoid a wholesale removal of duties to provide adult social care. See further information here.

 

The Emergency Bill passed in Parliament, meaning that it is now an Act. However, the Act is not in operation until the Secretary of State decides it is necessary and ‘switches it on’. If the Act is switched on, Local Authorities are under no obligation to operate at the minimum required by the Act; this is at their discretion. We do have concerns around authorities who choose to operate at the minimum required by the Act, and are working to ensure that the rights of children, adults and young people with learning disabilities and their families in the Care Act and Mental Health Act are not compromised. Government advice for local authorities around what the Act means for the Care Act has been published and is available here. There has also been guidance for vulnerable children and young people published here. This is broken down into a series of FAQs which help to explain what the guidance means. Guidance around the operation of the legislation on the Mental Health Act has not yet been published. 

 

We have received a response to our letter to DHSC, please see the letter here.

 

 

 

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