Unequal impact? Coronavirus, disability and access to services
On 22 December Scott Watkin, Co Chair of Learning Disability England’s Representative Body, appeared on Good Morning Britain.
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Disabled people’s rights, DNAR and Covid-19
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.
Staying safe at Christmas and Season’s Greetings!
The government have changed the rules since Gary wrote this blog. We have updated the links where the rules have changed.
The new government rules include
- Tier 4 rules that say stay at home and you cannot meet anyone outside your house or bubble. The places in Tier 4 are mostly in London, South and East – you can find them here
- Christmas changes to the rules are only for 1 day now
Other sources of support, information or advice
These are some of the other organisations funded by DHSC to support people during Coronavirus through advice lines, resources, training or local groups.
Court of appeal judgement on staff pay for sleep ins
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
Disabled people’s rights, DNAR and Covid-19
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.
Learning disability and autism training for health and care staff – formal consultation launched
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:
- Understanding Learning Disability and Autism
- Legislation and Rights
- Making reasonable Adjustments
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.
Self Advocacy Convention
The National Self-Advocacy Convention
There was 320 people who attended a very full national self -advocacy convention last month that ran through from the 24th-27th February.
It has been run now as The National Self-advocacy convention for the last 2 years.
Before this it was the Northwest Self-advocacy Convention and has been held at Grand Hotel in Blackpool for 17 years.
It was very exciting for everyone who came and was 3 full days of fun. I must say it gets more interesting and fun every year.
The team who organised it were the Pathways / North West Development Team (NWDT).
The conference, you cannot fault, it was a chance for all groups to network. There was plenty of workshops and a chance to look at big issues and discuss important topics and our vision for 2030.
The conference opened with a lot of music as you approached the stage. Vicky Buckingham got people exercising in her Zumba class and then there was Dance Syndrome and Disco.
There was also a Gala night on Wednesday which had a magician doing tricks. The only negative thing I will say is I think we may be in need of a bigger venue for next year! It would be great to see the convention grow even bigger than it already has.
Lasty, well done and thank you to everyone who worked on organising the conference, those who spoke or ran workshops and of course everyone who attended. Without you this brilliant event would not be able to happen every year.
By Gary Bourlet
Self-Advocacy and Family Peer Support Sessions helping people to be ‘more resilient’
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’”Solve Sleep-Ins Alliance: MP Response and Survey
In October, the Solve Sleep-Ins Alliance wrote an open letter to ministers as we are worried that essential overnight social care support services are at risk. This is because the government hasn’t offered enough guidance to help people understand what to expect, or do about the decision that staff who work sleep-in shifts don’t need to be paid the national minimum wage. The letter specifically asked for an explanation about how staff should be paid for sleep-ins and how this will be funded by commissioners. You can read the full letter here.
MP Kelly Tolhurst responded to the letter. You can read her letter in full here. The letter recognised the current situation around sleep-ins as an issue. A key message being that the Department of Health and Social Care is telling local authorities and commissioners they should not be using the Court of Appeals judgement as a chance to radically change their fee-paying practices.
We know this is an issue that matter to all our members. As part of our support for the Alliance we have created a survey to collect the views of Personal Budget holders, people who use Direct Payments and families. We are interested in how the issues around sleep ins are affecting you, your family and staff; especially if funding you receive for sleep-ins has changed.
We would appreciate you taking the time to help us gather evidence to support the alliances’ work. The survey should only take a few minutes to complete.
Take part in the survey here.