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Learning Disability England has joined voices with 0ver 70 other disabled people’s organisations and allies in an Open Letter supporting a Statement about the rights of disabled people during Covid 19.
We are all concerned about recent media coverage and letters from GPs about DNAR.
You can read the response from Professor Stephen Powis, National Medical Director, NHS England and NHS Improvement and Ruth May, Chief Nursing Officer, NHS England and NHS Improvement to the Open Letter.
Baroness Campbell replied to this response. You can read Baroness Campbell’s reply here.
The Chair of the United Nations Committee on the Rights of Persons with Disabilities also issued a joint statement on persons with disabilities and Covid-19.
As a result of this lobbying, the Care Quality Commission, the Royal College of General Practitioners, the British Medical Association and the Care Providers Association issued a joint statement on advance care planning.
They said “it is unacceptable for advance care plans, with or without DNAR form completion, to be applied to groups of people of any description”.
VoiceAbility have created a template letter to raise concerns about restrictions on care where someone has received a DNAR letter from their GP or other professional.
The template can be changed to add your personal details.
We carried out a ‘snapshot’ survey at the end of April to find out the experiences of our members and DNAR during the pandemic. Read the Full Report and Easy Read here
Read the Case Studies some of our members gave us as part of the survey.
Read about Do not attempt cardiopulmonary resuscitation (DNACPR) decisions on the NHS website here.
Guide about going into hospital from Georgia Frith, a SaLT and widgit symbols – easy read
Hospital passport / grab sheet template and guide on how to fill out the template. It’s important that passports are updated, and some family members have worked with nurses and British Institute of Human Rights to make an emergency COVID-19 hospital passport that means medical professionals can get the information they need quickly. This template has now being adopted by NHSE.
Fact sheet about the role of learning disability nurses during the pandemic from the Challenging Behaviour Foundation.
Guidance for care staff around supporting people with sensory loss, learning disability and autism. SeeAbility is part of a group of charities who have put together this advice on how to support people and communicate effectively.
NHS ‘Every Mind Matters’ resources – simple practical tips and videos from experts on dealing with COVID-19, stress and anxiety, boosting your mood, sleeping better and what you can do to help others.
How to look after yourself at home if you have coronavirus – NHS guidance
Easy read using an oxygen meter (oximeter) – from Kent Community Health NHS Foundation Trust
Epilepsy and Covid-19 – information, tips for coping and available health services from Epilepsy Action.
Bereavement Mini Set from Books Beyond Words – A collection of four books which cover bereavement and death.
When Someone Dies from Coronavirus – A guide for family and carers – from Beyond Words
Good days and bad days during lockdown wordless story – from Beyond Words
Having a Flu Jab – wordless story from Beyond Words – a story about what happens when you have the jab.
Easy read guide on looking after your feelings and your body from Public Health England.
Coping with feelings on anxiety by Respond – aims to help families to cope with their own feelings of anxiety at this time.
Series of videos about keeping well from Surrey and Borders Partnership NHS Foundation Trust:
Anxiety and the body
Five things to do when feeling anxious
Five seconds breathing exercise
Balloon breathing exercise
Breathing exercise using your imagination
Explaining mindfulness and the 5 things exercise
My relaxing place exercise
Keeping well tips from Inclusion North
Series of booklets about how to help yourself to stay fit and well during Coronavirus, from the Scottish Commission for Learning Disability. Easy read.
Poster with some tips for good mental health from Dorset People First. Easy read.
Stay Inside, Be Inspired, a series of resources from United Response to help people with learning disabilities to stay active and create structure during lockdown and beyond.
Bild is now offering a free Positive Behaviour Support (PBS) helpline to support families and carers of people with learning disabilities, mental health issues or autistic people with the challenges of living with Covid-19 restrictions.
Every Mind Matters resources from the NHS encouraging everyone to take steps to look after their mental health during this difficult time. The resources include tips and a free Mind Plan.
The Peaceful Minds project is working to support people with learning disabilities and autistic people who also have mental health conditions and anxieties. This is a co-produced project between Speakup Self Advocacy and Rotherham Advocacy Partnerships.
Stop and Watch tools to help spot the warning signs that a person’s condition is deteriorating. From NHS North Cumbria.
Grab Sheet about trauma from NWTDT and partners.
National Voices, Traverse and Healthwatch England carried out a research study called ‘The Dr will Zoom you now’. It looks at people’s experiences of remote and virtual consultations.
Five videos about breathing for people with #posturalcare needs at home, from Simple Stuff Works:
Video 1: the link between sitting and lying
Video 2: the impact of a reduced range of movement
Video 3: the impact of long term tummy lying
Video 4: what does supported lying look like
Video 5: what IS windsweeping anyway
Useful resources and guidance
COVID-19 vaccination training for clinicians – from NHS England
Supporting people with everyday technology – resources from Skills for Care
Managing capacity and demand within inpatient and community mental health, learning disability and autism services for all ages – from NHS England and NHS Improvement
Wellbeing resources for registered managers – from Skills for Care
Standard operating procedure: COVID-19 local vaccination services deployment in community settings – from NHS England and NHS Improvement
Resources for paid supporters on the 3 tier rules – from The Access charity
Going to work safely: Easy Read – information on how to travel to work and stay safe from Covid, from Mencap.
Information on the health protection regulations from the 4th November for all kinds of care and support providers – from The Access Charity.
The updated guidance on shielding and people who are clinically vulnerable – from The Access Charity.
Learning Disability and Autism Peer Education Contracts
As we move into a new future after Covid-19, families and carers face new challenges. Health Education England is looking for bids from potential suppliers who can provide rapid training to families, personal assistants and small independent care providers:
Blog about Coronavirus emergency legislation and what it means for the Care Act. The Coronavirus Act has emergency measures & changes to the law including the Care Act & Mental Health Act & measures to allow more staff in health & social care.
Resources for advocacy organisations and those who support self-advocates from Voiceability.
Grab Sheet about trauma from NWTDT and partners.
Resources for organisational members and family members who are carers or who help manage a family member’s Personal Budget. From NCVO.
Emergency fund to help support workers, including Personal Assistants, who need to take time off work due to Covid 19. From the Care Workers Charity (CWC).
Page for people and families to help share useful links, practical tips and ideas, including information about what people who manage their direct payments have put in place for themselves and their PA’s. From BeHuman.
ADASS has published the second of two reports on Social Service Directors feedback of the ‘terrible impact’ of the Covid-19 pandemic for those of us who need social care, our family carers and those organisations providing these crucial services. Find out more and read the report here.
TLAP have published Stories of Promise – a collection of stories that show the many positive and creative responses of communities, provider organisations and councils to the pandemic.
Paradigm have launched their report “Don’t ever call us ‘unskilled’ again!” It is about the experiences, stories and ideas from support workers during the pandemic.