Stronger, Louder, Together!
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
Guide about going into hospital from Georgia Frith, a SaLT and widgit symbols – easy read
Book about Going into Hospital and a short wordless story on ‘Beating the Virus’ from Books Beyond Words – 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.
Presentation about emergency planning and templates with tips(PDF or editable Word versions) from the Dimensions family support team.
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.
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.
These are some of the other organisations funded by DHSC to support people during Coronavirus through advice lines, resources, training or local groups.
The Court of Appeal has made a ruling on Sleep in payments.
The court found in favour of Mencap so this means that national minimum wage does not apply when a support worker is sleeping.
Learning Disability England has been part of the #SolveSleepIns Alliance to try and find a solution to this problem.
Here is the statement from the alliance. For providers of support and personal budget holders who directly employ support workers, this decision provides some relief for those who would have struggled to pay 6 years of back pay. However it does not solve the main problem that social care is grossly underfunded and those who we expect to perform some of the most important work in our society are living on wages that often do not reflect the important job they do.
We think that not only should support staff be paid fairly to sleep in but that greater investment by the government into social care should mean better rates of pay and conditions more generally.
We support the #SolveSleepIns Alliance call for the government to legislate for improved rates to be paid for sleep ins and that the government commit to funding this properly. At the moment many Personal Budget Holders are not paid equally to service providers and therefore have a disadvantage in some parts of the country in attracting the right support workers and this too needs to be resolved.
Claire Crossley, LDE family representative and personal budget holder says ‘the lack of value and pay for essential care that is the difference between being alive and actually LIVING. We need a national standard procedure that all local authority’s agree to follow so that we have better processes and rates of pay including pensions which is imperative for personal budget holders to operate within the law’
To download the solve sleep in Alliance press release click here
To download the judgement please click here
To download SolveSleepIns-Briefing on the sleep-in crisis please click here
Every two weeks since the start of lockdown Learning Disability England has held a zoom session for self-advocacy, family and community organisations.
Read more “Self-Advocacy and Family Peer Support Sessions helping people to be ‘more resilient’”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.
Wendy Burt, Scott Watkin and Jordan Smith as the Co-Chairs of Learning Disability England’s Representative Body acting on behalf of our members said;
“Understanding and properly listening to people with learning disabilities, autistic people or their families can be life-changing or life-saving so we are pleased the government has started this consultation on mandatory training.
We want to stop disabled people’s experiences being so different from non learning disabled people’s.
The training could be one part of stopping people’s experiences being so different.
We will look at the government’s ideas in detail but we are glad to see straight away that the consultation talks about changing health and social care staff attitudes and co-production in developing and delivering the training.
We will make sure LDE works with our members to know about this consultation and helps their feedback reach the Department Health and Social Care. We know that many LDE members have good practice, and evidence on what works to share as the Department asks”
The Department for Health and Social Care have started a consultation on training for health and care staff – it will be mandatory for some staff. That means they must do it as part of the training for their job.
This is happening after campaigns by families (like Oliver McGowans’) and recommendations from inquiries like the Learning From Deaths Reviews(LeDeR) programme
The consultation suggests the training covers 3 main areas:
There are questions on each chapter or the main points click here for consultation document.
The consultation is open until 12th April
You can find the easy read consultation here LINK
And full consultation here LINK
If you or your organisation are a member of Learning Disability England please do let us know if we can help you prepare a response and please do share your response so we can help bring together everyone’s ideas and main points across the membership.
Guest VLOG from Sarah Maguire, Chair of the Trustees for Learning Disability England and Chief Executive of Choice Support.
Video blog (VLOG) from Gary Bourlet, Membership and Engagement lead and self advocate.
