- Equality and health inequalities statement
- Why have we developed this non-statutory guidance?
- Legislation, statutory guidance and policy
- Good practice in engagement and communication for different parts of the system
- Appendix 1: Advice for patients, families and carers
- Appendix 2: Useful links
- Easy read resources – official publications from Public Health England (PHE) and NHS England and NHS Improvement
- Easy read support to use digital technology
- Other useful websites and links
- Resources – place-based approach to reducing health inequalities
- Developing local resources
- Voluntary organisations contact details
Publications approval reference: 001559
Learning disability and autism, dementia and mental health
Patient, carer and family engagement and communication during the coronavirus (COVID-19) pandemic
December 2020, Version 1
Promoting equality and addressing health inequalities are at the heart of NHS England and NHS Improvement’s values. Throughout the development of this guidance we have:
- given due regard to the need to eliminate discrimination, harassment and victimisation, to advance equality of opportunity, and to foster good relations between people who share a relevant protected characteristic (as cited under the Equality Act 2010) and those who do not share it; and
- given regard to the need to reduce inequalities between patients in access to and outcomes from healthcare services, and to ensure services are provided in an integrated way where this might reduce health inequalities.
This guidance has been assessed to identify potential equality impacts of the COVID-19 pandemic on people with mental health needs and a learning disability and autistic people. It is acknowledged that people with mental health needs, a learning disability or autism who contract COVID-19 may require reasonable adjustments. We know that adults with Down’s syndrome and people with a learning disability may be particularly at risk of a poor health outcome if they contract Covid-19. Further, it is acknowledged that the COVID-19 pandemic has affected many people’s mental health and wellbeing.
Health services must continue to have due regard to their obligation to advance equality under the Equality Act 2010; this includes recognising and factoring-in the vulnerability of different groups of people with protected characteristics; and inequalities in access, experience and outcomes in health services. The Advancing Mental Health Equalities Toolkit helps identify and address mental health inequalities in the round. Partnership working with voluntary and community sector partners is also encouraged to facilitate wrap-around support for vulnerable people, and to maximise engagement with underrepresented groups.
This is one of a suite of resources for mental health, learning disability and autism coronavirus guidance, which should be consulted in parallel. These resources cover:
- managing capacity and demand within inpatient and community mental health and learning disability and autism services
- patient and carer/family engagement and communication
- workforce considerations during the coronavirus pandemic
- supporting patients of all ages who are unwell with the coronavirus in mental health, learning disability, autism, dementia and specialist inpatient facilities.
This guidance is for:
- providers of acute, community, primary care and specialist services
Information is also provided for family members and carers.
It relates to matters that require particular emphasis in the context of the coronavirus (COVID-19) pandemic but does not cover all the matters that readers need to have regard to in exercising their legal responsibilities.
Advice for patients and families is given in Appendix 1.
The principles in this document are broadly applicable across a range of community health, mental health, learning disability and autism services and settings, but some content is likely to vary in its applicability across different patient/user groups. We have included illustrative examples of specific groups and service areas that may require additional considerations. Local services are encouraged to develop their own tailored strategies for different groups.
This guidance relates to children, young people and adults during the pandemic. It will be updated as required and only applies during the COVID-19 pandemic. When the guidance set out in this document no longer applies, this will be clearly communicated.
Communicating effectively and engaging patients, families and carers is more important than ever during this time of uncertainty. Effective communication is essential in ensuring appropriate care and respect for patients’ rights, and those responsible for caring for patients should identify any communication difficulties and seek to address them. Providers and commissioners should ensure accessible information is available for patients, families and carers in line with the accessible information standard, including easy read information. Co-producing with people with lived experience and their families will make sure your information is accessible.
The COVID-19 pandemic has demanded a change in the pace and delivery of healthcare. Local areas, providers, clinicians and commissioners are having to plan and deliver healthcare in ways that are unusual and different. For particular groups of patients and their families this can add challenges. This guidance is designed to support the system in managing these and working with groups of patients with additional needs at scale and in a way that they may not have done previously.It is non-statutory and does not take precedence over existing statutory guidance issued under the legislation set out below.
Children, young people and adults who have a learning disability, are autistic or both and/or have mental health conditions or dementia experience greater health inequalities than the rest of the population. This includes higher rates of physical and mental ill health and of premature deaths.
It is vital to recognise the key roles that families, parents and carers of this group of people play and the immense pressure they are under in relation to the circumstances arising from COVID-19. Changes in routines and difficulties in accessing familiar people and places may greatly impact on this group of children, adults and older adults.
During this period, it is important to note that some people may be more vulnerable due to social distancing restrictions and changes in care and support. If there are any concerns in relation to the safety and wellbeing of an individual, safeguarding policies and procedures should be followed as usual.
The key legislation relevant to the matters covered in this guidance includes:
- The Coronavirus Act 2020
- The Equality Act 2010
- The Human Rights Act 1998
- The Mental Capacity Act 2005
- Care Act 2014
- The Mental Health Act 1983
- Health Act 2009
- The Health and Social Care Act 2012.
The NHS Constitution for England October 2015 sets out rights for patients, public and staff. It outlines NHS commitments to patients and staff, and the responsibilities that the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively. All NHS bodies are required to take account of the constitution in their decisions and actions.
NHS England has also produced non-statutory Guidance to support NHS Commissioners on their Equality and Health Inequalities legal duties.
Statutory guidance that relates to engagement and communication includes:
- Patient and public participation in commissioning health and care: statutory guidance for CCGs and NHS England May 2017
- Patient and public participation guidance – a summary to support patient and public participation in commissioning health and care: Statutory guidance for CCS and NHS England May 2017
- Care and support statutory guidance issued under the Care Act Department of Health, 2014
- Mental Health Act 1983: Code of Practice Department for Health
- Mental Capacity Act 2005 Code of Practice Department for Constitutional Affairs (now Ministry of Justice), 2007.
- Equality and Human Rights Commission Codes of Practice.
Users of this document should have regard to existing statutory guidance issued under legislation and codes, standards and guidance issued by their health and care professional regulators and other NHS documents including:
- Implementation Guidance for the NHS phase 3 response to the pandemic includes urgent actions to address inequalities in NHS provision and outcomes
- Staying Mentally Well: Winter Plan
- NHS Operational Priorities for Winter and 2021-22
|All parts of the system, commissioners and providers, including social care settings
|All should work to empower, reassure and protect patients, families and carers through ensuring:
Additionally, to meet the needs of these vulnerable groups:
|Acute medical settings
|Community services (eg paediatrics, therapies, health visitors, wheelchair services)
|Mental health, learning disability and autism providers
1. Advice for people with a learning disability, autistic people, people with mental health conditions and dementia about engaging with services
We are living through a difficult and unprecedented time that is challenging for many people across the country. For people with a learning disability, autistic people, people with a mental health condition or dementia there may be extra challenges, and people may experience a whole range of difficult emotions or be experiencing emotional distress. Some may be struggling with feeling lonely and isolated, some perhaps are feeling anxious or worried, or are struggling to get basic needs like food and medicine.
We want you to know that NHS services, including mental health and learning disability services, are still very much open and here to support you. This document offers advice on how to get in touch with services and to get access to the support and help you may need.
Accessing support from services
- Don’t let a concern about coronavirus stop you from seeking medical care or attention when you need it – whether your symptoms are linked to coronavirus or not. NHS services are open to support you, so please do contact them.
- If you are worried about coronavirus, use the support lines that are available.
- Use the accessible information available on coronavirus on official sites such as gov.uk or nhs.net, NHS.uk or any other local NHS or government site.
- In these difficult times, be aware that services may be affected and may need to work in different ways. They should explain if any changes are made to your care and support. Face-to-face appointments may not be possible, but services should talk to you about this and offer an alternative.
- If you are in hospital you should be supported to maintain contact with your family using the telephone or the internet. Staff should support you to do this. Visits are allowed too in line with the latest visitor guidance. There is also specific guidance about visiting people who are in a mental health, learning disability or autism inpatient setting sent in a letter from Claire Murdoch, National Mental Health Director and Ray James, National Director for Learning Disability and Autism that sets out expectations for visiting in these settings.
- Make sure people understand the impact on you (or if it is appropriate, your family) if your care and support package has changed. You can contact the central advice and duty teams in your area to discuss this. You can find this number on your local authority website. Your social worker should be giving you information about this. If you need to find out details about your local authority, see find your local council.
- You can challenge any rules or decisions made for whole groups of people, rather than on an individual basis, because they affect your care and support package (this is sometimes called a blanket restriction or decision). Changes should only be made on an individual basis after your needs, and the risk of changing your care and support, has been considered.
Some things you can do to help
- Don’t be afraid to ask for advice or support – talk to friends, family, advocates and others who support you; stay connected with people. You can do this using the telephone, Skype, Facetime, Microsoft Teams, WhatsApp, and there are lots of other apps that will support you with this. You can find resources for: Easy Read WhatsApp Guidance and Easy Read Microsoft Teams Guidance.
- If you don’t have access to, or find it difficult to use these things, talk to someone you trust about what might be the best way for you to stay in touch, and let them know you need help if you do.
- Let people know if you don’t have the right equipment to communicate with them via the internet or social media; you might be able to get some help with this. Talk to your social worker, keyworker, care co-ordinator or other professional involved with your care and treatment.
- Be prepared – try to make sure your health passport, health action plan and any other health documents you have are up to date. You can ask your supporter, friends, community nurse, social worker or carer to help you do this.
- Are not afraid to ask for help if (you) or your family member is at risk of crisis (e.g. through your social worker, health commissioner or local authority helpline).
- Know the current status of important appointments (in education, health or social care), what is happening about them and how or when they will happen (e.g. if they are being reorganised or moved online).
- Ensure fear of COVID-19 doesn’t prevent them from seeking urgent medical attention for other non COVID-19 illnesses during this period (e.g. toothache) or from keeping up to date with existing health needs (e.g. putting in prescriptions for medications). Health services are putting in place lots of precautions to prevent the spread of COVID-19, with many reconfigured to separate patients with symptoms of COVID-19 from those without.
- Are not afraid to raise concerns and challenge:
- any discrimination in care and treatment that does not respect your family member’s rights and their need for reasonable adjustments
- diagnostic overshadowing: this can be when a health professional assumes that the behaviour of a person with a learning disability, mental health condition, dementia or an autistic person is part of their disability or is a symptom of mental illness, without exploring other factors that may be causing the behaviour – e.g. being physically unwell. Be confident about challenging diagnostic overshadowing by clearly sharing what is normal for the individual, what has changed and why you are concerned
- decisions made about care and treatment without appropriate risk assessments
- where you see the do not attempt cardiopulmonary resuscitation (DNACPR) recommendation being made because of a disability diagnosis, age or other protected characteristics, rather than on an individual, person-centred approach. A DNACPR decision means that if the person’s heart stops beating, they have a cardiac arrest and will be allowed a natural death rather than CPR being attempted.
- Keep in touch when unable to physically visit your family member (e.g. in a care home or a mental health inpatient setting where visiting has been restricted to prevent the spread of coronavirus), and work creatively with commissioners and providers to ensure contact continues remotely and the needs and rights of your family member are respected. Contact providers about visiting arrangements as face-to-face visiting is now supported in line with the latest visitor guidance. If you have difficulty accessing or knowing how to use technology, then let professionals know if you either don’t have the equipment or knowledge and ask them how they can help with this.
- Recognise the challenging conditions many clinicians and professionals are now working in – and understand if things are not always done as quickly as you might like, but don’t leave things unaddressed if they are important for you or your family member.
- Seek information and advice from trusted sources, both locally and nationally (e.g. www.nhs.uk, Contact, Challenging Behaviour Foundation, National Autistic Society, Childline, MIND, Rethink, Carers UK, Dementia UK), as well as booklets such as Supporting carers and care staff to understand and respond to changes in behaviour in people with dementia during the COVID-19 pandemic, to help you and your family member stay safe and happy.
- If you are the parent or carer of a child or young person, the Council for Disabled Children has a range of support and advice available in relation to COVID-19.
- The Department for Education has information and guidance on its website about what is happening for children and young people, access to schools and how children they class as vulnerable continue to be supported. See Coronavirus: guidance for schools and other educational settings.
- The Department for Education, NHS England and NHS Improvement, and the Department for Health and Social Care will be preparing some frequently asked questions answers in relation to children and young people. If you have any questions you can send them to CDCquestions@ncb.org.uk or through your local parent carer forum.
If you are a young carer looking after a family member, you can find more information by visiting support for young carers. You can also find helpful information from the Department of Health and Social Care.
1. Easy read resources – official publications from Public Health England (PHE) and NHS England and NHS Improvement
- Local Restriction Tiers
- Advice for people who are most likely to be very poorly if they get coronavirus.
- Staying alert and safe
- PHE has also produced Advice on education and childcare andEasy read advice about Coronavirus
- NHS England and NHS Improvement sent an ‘at risk’ letter to the group of people whose physical health conditions mean they are at the greatest risk from coronavirus. An easy read version of the letter can be found here
- NHS 111 guidance and video help for people with a learning disability or autism
- NHS England guidance on the restoration of community services
- Ask Listen Do – Information and resources to make giving feedback, raising concerns and making complaints about education, health and social care easier for children, young people and adults with a learning disability, autism or both, their families and carers.
Other useful guidance:
- Guidance on shielding and protecting people who are extremely clinically vulnerable from COVID-19
- Priority Groups for Coronavirus (COVID-19) vaccinations
- Books Beyond Words resources
- Mencap Easy read handwashing advice
- National Autistic Society guidance and helpline for parents, young people and staff
- Mencap easy read guide to coronavirus
- Place2Be guide to helping parents answer questions from their children and to support family wellbeing
- Young Minds – Talking to your child about coronavirus 10 tips from their Parents Helpline to support family wellbeing
- Carers UK COVID-19 guidance
- Overbook – an interactive resource designed to support and reassure children aged seven and under, by explaining and drawing the emotions that they might be experiencing during the pandemic
- Every Mind Matters – support during COVID-19
- Photo symbols coronavirus posters
- Purple All Stars handwashing video
- Video showing Makaton signs to aid communication about coronavirus for people with a learning disability.
- The Learning Disability Professional Senate has developed two resources for people with learning disabilities and their families:
- Resuscitation Council UK resources pages on decisions relating to cardiopulmonary resuscitation.
Public Health England has developed these resources in collaboration with the Local Government Association, Association of Directors of Public Health and NHS England and NHS Improvement to complement the wealth of existing work on health inequalities at a local level. They include:
- COVID-19 Place based approach to reducing health inequalities overview
- COVID-19 Summary of guidance and support for vulnerable groups
- COVID-19 Suggestions for mitigating the impact on health inequalities at a local level
- COVID-19 Health Equity Assessment Tool (HEAT) for local areas
- COVID-19 Data tools to support local areas
To support the development of local resources, NHS England and NHS Improvement have the following resources.
Advice about making information accessible
- Advice about using good language to talk about disability and on keeping jargon out of conversations
- Guide to making information accessible for people with a learning disability
Specific advice on working with people
- Involving people with a learning disability
- Find your nearest self-advocacy group
- Involving autistic people
- Involving family carers – especially when their child is unable to give feedback themselves
- Find your nearest parent carer forum
Help getting feedback
- Ask Listen Do – resources to help autistic people, people with a learning disability and family carers give feedback, raise concerns and make complaints.
A list of some voluntary organisations who offer support to people with a disability and or family carers. This list is not definitive: there are other relevant national and local organisations.
|Name of organisation
|Type of people they support
|Website and contact number
|Council for Disabled Children
|Disabled children, young people and their parent carers; health and local authority commissioners; designated clinical and medical officers (SEND); designated social care officers (SEND)
|Challenging Behaviour Foundation
|Families of children, young people and adults with a severe learning disability and behaviours that challenge
0300 666 0126
|People with a learning disability and their families
0808 808 111
|Families of disabled children
0808 808 3555
|Learning Disability England
|People with a learning disability and their families
0300 111 0444
|National Autistic Society
|Autistic people and their families
0808 800 4104
|People with mental health conditions and their families
0208 215 2243
|People with mental health conditions and their families
|Children and young people with a mental health condition and their families
|YoungMinds – children and young people’s mental health charity
0808 802 5544
|Dementia UK and Admiral Nursing Support
|People with dementia and their families
0800 888 6678
|People with dementia and their families
|National dementia helpline: 0300 222 1122
|People with caring responsibilities for others
|BEAT – The UK’s Eating Disorder Charity
|People with an eating disorder and their families or carers
|National Domestic Abuse Helpline
|Women and girls at risk
|The freephone, 24-hour National Domestic Abuse Helpline: 0808 2000 247
|Women and girls at risk