The Coronavirus pandemic has brought unprecedented changes to our lives and the news and social media are filled daily with updates and worrying information and stories. For people with disabilities and their families, it is a time of incredible stress, anxiety and fear. We are already absolutely exhausted from ten years of fighting for our rights and needs to be acknowledged and met in an extremely hostile climate, now the virus brings with it unimaginable concerns for our well-being and safety. Through this update, you can find information on current national and local government advice/help and campaigns which have been running to address the particular disability issues related to Covid-19.
Up to 1.5 million people in England who face the highest risk from the virus have been asked to stay at home. If this includes you, you should receive communication soon with detailed advice about how to protect yourself, this will either be by a text message or by letter.
People falling into this extremely vulnerable group include:
- Solid organ transplant recipients.
- People with specific cancers:
- people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
- people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
- people having immunotherapy or other continuing antibody treatments for cancer
- people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
- people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
- People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
- People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
- People on immunosuppression therapies sufficient to significantly increase risk of infection.
- Women who are pregnant with significant heart disease, congenital or acquired.
The advice from the government as to how to shield yourself is as follows:
- Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
- Do not leave your house.
- Do not attend any gatherings. This includes gatherings of friends and families in private spaces, for example, family homes, weddings and religious services.
- Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
- Keep in touch using remote technology such as phone, internet, and social media.
Do use telephone or online services to contact your GP or other essential services.
This advice will be in place for at least 12 weeks from the day you receive your communication.
How can you receive help?
The government is setting up the “NHS Volunteer Responders” service to support people in the shielding group, they should be able to provide help such as driving you to and from hospital, delivering food and medication and telephone befriending. If you need clarification as to how to access this, please contact us. You can register to get support here: https://www.gov.uk/coronavirus-extremely-vulnerable If you’re not sure if you are in this group, the advice on the page is to register anyway.
Increased risk (vulnerable) group
There is a second group identified as being at increased risk of more severe illness from Covid-19, this includes those who are:
- aged 70 or older (regardless of medical conditions)
- under 70 with an underlying health condition listed below (i.e. anyone instructed to get a flu jab as an adult each year on medical grounds):
- chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
- chronic heart disease, such as heart failure
- chronic kidney disease
- chronic liver disease, such as hepatitis
- chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy
- problems with your spleen – for example, sickle cell disease or if you have had your spleen removed
- a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy
- being seriously overweight (a body mass index (BMI) of 40 or above)
- those who are pregnant
The advice for this group is to be very mindful of following these measures:
- Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough
- Avoid non-essential use of public transport when possible
- Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information
- Avoid large and small gatherings in public spaces, noting that pubs, restaurants, leisure centres and similar venues are currently shut as infections spread easily in closed spaces where people gather together.
- Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media
- Use telephone or online services to contact your GP or other essential services
How can the vulnerable group get help?
As can be found on our website, there are many community groups being set up which often bring together a number of different organisations within local areas to provide support for those self-isolating in the shielding and vulnerable groups. Please refer to our information about these groups in Broadland or contact us if you need help finding people to support you.
- Existing DLA (Disability Living Allowance) and PIP (Personal Independence Payment) awards have been extended
- DLA to PIP transitions are therefore not currently required
- All face to face assessments have been cancelled
Campaigns and issues
You may have seen the Change.org campaign with extremely alarming information about people with disabilities and access to emergency care for Covid-19. The original intention seemed to be that on admission, all adults would be assessed for treatment with the Clinical Frailty Score (CFS); clearly the implications for those with disabilities being that they may be greatly disadvantaged.
Due to pressure being applied by many groups, these guidelines have now been updated to state that “the tool should not be used in certain groups, including those with learning disabilities or with stable long-term disabilities such as cerebral palsy.”
You can read the updated guidelines here: https://www.nice.org.uk/news/article/nice-updates-rapid-covid-19-guideline-on-critical-care
There are two very significant areas for concern within this Bill for us. Firstly, the changes to the Care Act as follows:
“Make changes to the Care Act 2014 in England and the Social Services and Well-being Act to enable Local Authorities to prioritise the services they offer in order to ensure that the most urgent and serious case needs are met, even if this means not meeting everyone’s assessed needs in full or delaying some assessments”
The duty of care towards an individual at serious risk of neglect or harm is not removed.
This section of the bill provides a great deal of leeway for the local authority to effectively free itself from its social care support duties except in cases where there is extreme risk to the person. Duties towards young people transitioning to adult social care have also been removed. Disability Rights groups such as Inclusion London have written a statement about this which you can find here:
The second area for concern is the changes to the Mental Health Act, also detailed in the information produced by Inclusion London. One person will now be able to recommend a person be detained under this Act as opposed to three, equally time limits for release or detainment can be extended or removed. Clearly again, there is significant cause for alarm with regards human rights being maintained under these changes.
As Disability Officer I have highlighted these issues with our Labour County Councillors who will maintain a very watchful eye on how things progress along with our Norfolk Labour MP. Please contact us about anything you wish to raise with regards these changes either in terms of how you have been directly impacted, to voice your concerns or if you need help. You could also send these to our MP and your County Councillor.
Norfolk Short Breaks Services/Education
A number of representational groups such as Family Voice Norfolk, Sensational Families and Sendiass have been meeting with Norfolk County Council to raise issues relating to education and social care for children and young people with special educational needs and or disability (SEND). An important statement has now been released from the Short Breaks Team. You can find the information here: https://www.norfolk.gov.uk/children-and-families/send-local-offer/social-care/send-children-social-care/social-care-services/short-breaks/short-breaks-team-update-relating-to-covid-19
There still does not seem to be a designated emergency line for parent carers to use in the event that they become very unwell and may need further support. This has been raised and is being followed up.
Most schools are now closed to all but children and young people of keyworkers and a few pupils with SEND or who are classed as vulnerable. It is possible that your school will be open for you to contact them for help and support with meeting the needs of your child, let us know if you have any concerns or worries about this, we may be able to help.
Norfolk Adult Social Care / Care payments
Information received is as follows:
- All care plans of the people the council supports are being reviewed to see what is in place in the case of care breaking down. In many cases people are being telephoned to discuss
- The Council is working alongside home care agencies to identify people who might be at particular risk or isolated so they can find alternative ways to support if a need arises
- A 24 hour emergency number 0344 800 8020 has been set up for anyone with individual concerns
- Work is taking place with the council, the NHS and providers to significantly increase hospital discharges to support hospitals with the necessary capacity to manage the outbreak
- There is regular contact with other care providers to ensure they have robust contingency plans in place to meet people’s needs
- Plans are being developed to: support the financial resilience of home care, supported living, day opportunities and residential care providers over the coming months, work with primary care and GPs to identify people with underlying health conditions in the community, work with communities, third sector organisations and providers to support the implementation of social distancing for vulnerable people
Again, please advise us if you have concerns, need anything or feel that the above is not happening particularly in light of the changes to the Care Act 2014 under the Coronavirus Bill.
Disability Network Norfolk Group have been campaigning strongly in response to increases in care payment charges sent out to families this week. This has been supported by groups such as Social Action who provided information to say that Greenwich had postponed social care increases in view of the lack of care available currently.
Norfolk County Council has now also delayed implementing the planned increase in care costs to adults with disabilities. A spokesman from the Council confirmed that, “New money from government is allowing us to compensate for the effect of the MIG (Minimum Income Guarantee) changes for the next four months, when the situation will be reviewed.”
At the time of writing, a FAQ sheet is being prepared by Direct Payment Services at NCC which should also say that Care Charges have been suspended when care is not being received. We will post an update about this on our website when the FAQ sheet is released: https://www.broadlandlabour.org.uk/
Other guidance has been released about paying PAs and changes to Employment Law from 1 April 2020, please contact the DPSS for further help on 01603223392 or email firstname.lastname@example.org
Online shopping difficulties
There have been numerous issues for people who are self-isolating in accessing online shopping slots and for family carers and adults with disabilities this has caused a great deal of stress and worry. Obtaining essential and specific food items and things needed to meet care needs continues to be hard.
It is hoped that many of these difficulties may be mitigated by the new NHS Volunteer service and local support services but rest assured that these issues continue to be raised via numerous different groups who are well aware of the significant distress this has caused.
If this is affecting you and you have been unable to get basic items, you can contact us to let us know you need help. You could also contact your Parish or Town Councils, District or County Councillors and our MP who should all be able to advise what you can do.
Contact me about anything in this update, any help you need or just to chat on 07595 642664 or at DisabilityOfficer@bclp.uk We also have our Disability Forum on Facebook which is providing a welcome place for support and socialising, you can find it at: https://www.facebook.com/groups/1136295883368096/