Customer wellbeing

The NHS has information for people who are approaching the end of their life and people who want to plan for their end of life care.

The Victoria and Stuart Project has published a resource for End of Life (EOL) care planning with people with learning disabilities.  The toolkit was created together with people with learning disabilities, families, learning disability support staff, and healthcare professionals. It includes resources and approaches to support staff with end of life care planning with people with learning disabilities. 

Marie Curie
Advance care planning is a way for someone to express and document how they wish to be cared for as their illness progresses. Planning ahead can help you and other healthcare professionals understand what's important to the person and care for them in a way they'd like. You should be ready to talk to people about their wishes and support them to make an advance care plan.  This information is for health and social care professionals.

Planning activities 

The Aldingbourne Trust has developed easyread home exercise ideas and home activity ideas.

Accessing health services

Reasonable adjustments for people with learning disabilities

The two links below, to videos hosted on YouTube, explain what reasonable adjustments are and how they help people with a learning disability use mainstream health services.

• Mencap Film
• Surrey and Borders Partnership NHS Trust

Guidance on working with adults with learning disabilities and/or autism

Beyond Words is providing free picture stories and illustrated guides to support people with learning disabilities and autism through the coronavirus pandemic

Shielding and people with a learning disability

People at high risk from Covid-19 are no longer told to stay at home (shield). There are still things you can do to keep yourself safe.

Please see DHSC Guidance for people previously considered clinically extremely vulnerable from COVID-19 for further information on this.

The Alzheimer’s Society has a range of resources and help available to support people living with dementia during the COVID-19 pandemic. 

They have also produced guidance on  supporting people living with dementia during bereavement.

Alzheimer’s Society helpline: 0333 150 3456 .

Further resources

• Advice for people with dementia and their families, including information about contacting Admiral Nurses is available on the Dementia UK website. Helpline: 0800 888 6678.
• Report on people living with dementia who walk with purpose or intent during the Covid-19 crisis a National Institute for Health Research review looking at how to manage care home residents with dementia who ‘walk with purpose or intent’ such that infection prevention measures are not breached during an epidemic such as COVID-19.

Clear face masks to help with lip reading

There are many  examples of  transparent masks to help with lip reading that can obtained through online suppliers.

SignHealth videos

The charity SignHealth provides British Sign Language (BSL) videos of  guidance published by the NHS. 

Digital Flashcards 

Designed to improve communication through the PPE barrier,  the flashcards are available in different languages and help COVID-19 patients understand hospital staff. To find out more visit the Cardmedic website. 

Communication symbol boards

There are communication boards now available for used during the COVID-19 pandemic.

• Critical care COVID-19 communication chart
• COVID-19 communication tools

Royal National Institute for the Blind (RNIB) has increased support and services to ensure blind and partially sighted people get the information they need. Anyone who needs support and advice can call the helpline by phone on 0303 123 9999 or email helpline@rnib.co.uk.

RNIB’s helpline has extended its opening hours. It is now open on weekdays from 8am to 8pm and on Saturdays from 9am to 5pm.

Social Care Institute for Excellence

Social Care Institute for Excellence has developed a guide which includes information, resources and ideas that you can use and share with the people you support. This provides a wide range of information including:

• Shielding
• Social contact / connecting with others
• Going outdoors
• Mental wellbeing
• Physical health
• Online resources and activities
• Helplines and support

Mental health helplines

There are a number of helplines available to support people with their mental health which would be particularly useful for people who are isolated or vulnerable.

• Age UK 0800 169 6565 (open 8am-7pm every day);
• The Silver Line 0800 470 8090 (open 24/7)
• Mencap Helpline (open 9-3pm Mon-Fri) 0808 808 1111
• Autism Helpline (open 10-3pm Mon-Fri) 0808 800 4104
• The Sussex Mental Healthline (0300 5000 101) offers crisis care for people in urgent need of help who are experiencing mental health problems including stress, anxiety and depression. It is available 24 hours a day, seven days a week; no appointment needed.
• Hearing You (01273 425047) is a new Christian phoneline in Sussex that provides pastoral support and a listening ear to people directly affected by the COVID-19 outbreak (open 9am-7pm Mon-Fri).

Bereavement Support

Cruse Bereavement Care has developed resources on how bereavement and grief may be affected by the COVID-19 crisis.

At a Loss.org has information and advice to support people who are bereaved during the COVID-19 pandemic, including ideas to help people feel less isolated, supporting someone who has been bereaved, advice on funerals and memorials, supporting children, and useful contacts.

New process for repeat Deprivation of Liberty Safeguards (DoLS)

West Sussex County Council DoLS team is changing its process for ‘repeat’ DoLS assessments, (further DoLS assessments when a resident has already had at least one DoLS authorisation). With your help, we want to ensure as many residents as possible who need a DoLS get one in good time and in a proportionate and sensible way. 

Implementation of Liberty Protection Safeguards

The Government has issued a statement which provides an update on the implementation of Liberty Protection Safeguards (LPS). LPS was due to come into force on 1 October 2020, however this has been moved to April 2022.

For more information, read the statement provided by the Department of Health and Social Care .

Best interests decisions: A COVID-19 quick guide

This Social Care Institute of Excellence (SCIE) guide covers best interests decisions during the pandemic and aims to offer some useful thoughts about what to take into account in different situations. It covers topics such as self isolating, social distancing, testing and making decisions about moving home.

Further information

Mental Capacity, Best Interests Decisions and Deprivation of Liberty: A Guide for Managers of Care Homes and Hospitals - West Sussex County Council guidance. 

The Social Care Institute for Excellence has produced  guidance on the implications for the MCA during the COVID-19 pandemic.  

CQC has produced guidance on working within the Mental Capacity Act during the coronavirus pandemic. This highlights issues to consider when thinking about care and treatment that might involve restrictions because of COVID-19. 

The West Sussex Safeguarding Adults Board (SAB) website provides information and guidance on safeguarding, for providers and the public.

The board has collated useful links on COVID-19 from government, health and local organisations.

The SAB website also includes general safeguarding policies and procedures.

The Sussex bereavement guide was contributed to by Partners across the Sussex Health and Care System (SHCS), during the COVID-19 pandemic.

This highlights guidance and support with a focus on both the practical requirements, such as registering a death and organising a funeral, and the effect of bereavement, for example when people would like to talk to someone about their experience or feelings and more specialised aspects, such as when someone is experiencing mental health problems or the impacts due to faith or religious beliefs.

Sudden - Free bereavement support
Sudden is an early intervention service providing emotional and practical support in the first ten weeks following an unexpected bereavement. They help if a loved one (usually a family member or partner) has died in a way that may be sudden or shocking. They can also help if you are caring for someone bereaved in this way.
Their service is free of charge and provides emotional support and help with many practical things. Sudden will provide a named, qualified, friendly and professional caseworker to give support whatever the cause of death. For more information please see their website.

Wishing Well

This is an organisation which uses live music as a way to help everyone to feel connected, expressive and more joyful. The team are professional music facilitators, trained specifically to work with vulnerable people. A new "Doorstep Music" programme has been created which involves live music being played to people from a safe distance in front of their homes. This free service is being offered to care homes across Sussex who have an outdoor space. Visit the Wishing Well website to find out more.

Health Innovation Network

A  guide to online resources for 'Maintaining activities for older adults during COVID-19'has been developed by the Health Innovation Network. Please note this document might not be suitable for users with assistive technology. If you need this information in another format, please contact aopcontracts@westsussex.gov.uk

West Sussex Libraries:

The West Sussex online library has a wide range of resources and useful information including:

• eBooks and eAudiobooks
• eMagazines and eNewspapers

There is also a dedicated section specifically for care homes

For those who feel safer staying at home or are unable to get to the library, the library may be able to deliver the items. Please indicate on the Staff Select form or during a phone call to the library that a delivery is being enquired about.

Activities to Share

Activities to Share are offering free activity resources to download.

We love to sing

Research shows that there are risks associated with transfer of Covid-19 through build-up of aerosol droplets during group singing activity in indoor spaces. However we know that singing plays an important role in care settings. This resource sets out some tools to help you make informed choices and decisions about whether and how to sing.

On 15 April 2024, the UK Health Security Agency (UKHSA) published new guidance: Supporting safer visiting in care homes during infectious illness outbreaks. The document provides general principles to support advice and decision making for anyone involved in the provision of advice to adult social care homes.
It provides a review of the issues which should be considered in safely planning and protecting visiting during outbreaks of infectious illness.
There should not normally be any restrictions to visits into or out of a care home. However, during an infectious disease outbreak, health protection teams may, in exceptional circumstances, advise that providers reduce the number of people entering and leaving a care home to reduce the spread of infection. This should only happen if facilitating a visit would pose a significant risk to the health or wellbeing of someone in the care home premises, which cannot be mitigated through other precautions.

Guidance has also been updated recently in line with changes to testing policy from 1 April 2024.
• From 1 April 2024 routine asymptomatic COVID-19 LFD testing on discharge from hospital into care or hospice settings will end aligning with the approach for other respiratory illnesses.

Further information can be found on the government website.

People with urgent support needs who would run out of food or medicine within the next 3 days should be encouraged to contact the West Sussex Community Hub either by phone on 033 022 27980 or via the website. The website also gives information on other sources of support, where the request for support is less urgent.

Free delivery from a local pharmacy is available if people have no other way to get their medicines due to self isolating.