Carers and disabled campaigners raise fears about relaxing Covid restrictions

Disabled campaigners and unpaid carers are demanding clarity from the Scottish Government over moves to relax Covid restrictions despite rising case numbers, stating the risk to their lives and those of their families is not one worth taking.

Nurse in a care home talking to an elderly woman in a wheelchair

More than 80 representatives of disability groups, disabled individuals who those care for a vulnerable person have signed a letter asking for support after months of “sacrifice”, claiming they are now in a position of having to impose their own restrictions “or even return to shielding” as Covid regulations and guidance are eased.

In the letter, published in full below, they say the announcement by the UK government “that we will all need to ‘live with Covid’" had left them “shaken” and fearing for the loss of more lives.

"It has illustrated whose lives matter and who is dispensable,” they write. "Whilst these decisions apply to England, they will have direct and indirect consequences for Scotland, particularly during the holiday period.”

“We are a group of disabled people, those with pre-existing health conditions, unpaid carers and equality organisation representatives and we strongly oppose the UK government’s approach. We seek clarity from the Scottish Government on its current response, along with evidence-based action to ensure the safety and quality of life of all in the face of such a drastic rise in Covid-19 cases.”

They add: “The Scottish Government has repeatedly stated its commitment to a human rights-based approach, but the decisions being taken, and the apparent inaction as Covid-19 cases rise, undermines this commitment to those with pre-existing conditions, disabled people and those caring for them.

“We appreciate that people are desperate to return to “normal”, but normal was already not working for huge numbers of Scotland’s population. We want to see Covid-19 controlled as far as possible, so we can live a healthy and safe life long-term, rather than the inevitable peak in cases, return to lockdowns and the overwhelming of our healthcare system and other public services.

“We do not want to see more people being lost to this dangerous virus.”

Signatories to the letter, 83 per cent of whom are women, include 32 unpaid carers along with chief executives of One Parent Families Scotland, Inclusion Scotland, Glasgow Disability Alliance, Disability Equality Scotland, Health and Social Care Alliance Scotland as well as directors of Carers Scotland, Coalition of Carers in Scotland, the Poverty Alliance, and the chair of the Scottish Independent Living Coalition.

One signatory, Shubhanna Hussain-Ahmed, an unpaid carer from Stirling said: “I think many of us watched in horror as plans for “freedom day” in England were unveiled this week.

"Over the last 18 months, many of us have been grateful for the mitigations that have been put in place to protect families like ours. I signed the letter because I hope and believe that we can and should do things differently here in Scotland.”

Glasgow-based Lynn Williams, an unpaid carer for her husband agreed, and added: “As families who have faced significant risk and stress during this crisis and who have been part of a hidden frontline in fighting Covid, we are asking for clarity from the Scottish Government.

"Given only a few weeks ago, we locked down Glasgow in Level 3 for more than 150 cases per 100,000, we have to question why we are not doing the same now when we have consistently high rates across the country?”

Sanjeev Mann, a disabled journalist and activist based in Glasgow said:

"The increase in the number of cases shows the risks that we still face, and many disabled people like myself are still very much worried about the potential of catching the virus.”

Dr Sally Witcher, former CEO of Inclusion Scotland and disabled campaigner said removing restrictions while infection rates were “sky-rocketing” would be “to remove protections from very many people like me.

Responding to the letter, a Scottish Government spokesperson said: “We know that some people at highest risk may have heightened anxiety as restrictions ease and are mindful of this as we consider the next steps.

"The Chief Medical Officer will be writing to everyone who is on the highest risk list soon with advice about what moving to Level 0 and beyond will mean for them.

“There remains a significant group of people at highest risk from Covid-19 who have not yet had both doses of the vaccine. We would encourage all those who are able to, to get vaccinated as soon as possible, though we understand there are some people whose health condition or age prevent them from doing do.”

However Scottish Labour health and social care spokesperson Jackie Baillie said: “This letter must be an urgent wake up call for government ministers.

“Carers and those for whom they care cannot be put in danger due to changes in government guidance at a time when the virus appears to be spiralling out of control.

“Frontline care staff and unpaid carers suffered immensely during the first wave of the virus - the lessons from that terrible period must be learned.

“Today I am calling on the SNP government to heed this urgent wake up call, get round the table with carers and campaigners, and put in place a contingency plan to allow for greater protection for carers and those for whom they care while restrictions ease.”

FULL LETTER AND SIGNATORIES:

It has now been over fifteen months since the first COVID19 lockdown in March 2020.

At the time we were told that we needed to be there for each other – that the measures we took to try to suppress the virus were for everyone’s protection. We heard Ministers tell us that every life was worth protecting. That message was an important one, as it set the tone for Scotland’s – and the UK’s - response to this virus.

For those of us at particular risk of, or caring for others at real risk of hospitalisation or death because of COVID19, this was a critical message. It said that everyone had value and was worth saving. Families felt that there was an extra layer of protection in place – the focus on COVID19 elimination provided hope.

The announcement by the UK Government that we will all need to “live with COVID” and the end of all restrictions, has left us shaken. It has illustrated whose lives matter and who is dispensable. Whilst these decisions apply to England, they will have direct and indirect consequences for Scotland, particularly during the holiday period.

We are a group of disabled people, those with pre-existing health conditions, unpaid carers and equality organisation representatives and we strongly oppose the UK Government’s approach. We seek clarity from the Scottish Government on its current response, along with evidence-based action to ensure the safety and quality of life of all in the face of such a drastic rise in COVID19 cases.

In Scotland, we are very concerned about inconsistency, the apparent change in narrative and the direction of public health decisions. Over the last week, Scotland has witnessed the highest number of positive COVID19 cases during this crisis, and we are now in the unenviable position of having some of the highest COVID19 rates in Europe. But rather than stepping into action as we have done before, the policy focus seems to be solely on the

vaccine programme, and the weakened (but still active) link between COVID19 and severe illness or death.

Science tells us that vaccines alone are not enough. Many thousands are at real risk, especially whilst COVID19 rates remain so consistently high. The possibility of new and stronger variants mean that vaccine escape is a very real concern.

All of this has significant ramifications for our society and economy. The inequality and invisibility already faced before COVID19 by disabled people, those with pre-existing conditions and unpaid carers (the majority of whom are women) has been exacerbated. Any planned easing of restrictions must put the lives of those most at-risk first.

Any policy decision to ‘live with COVID’ implies that the risk to our lives, and to the lives of our families, is a risk worth taking. We do not agree.

There was hope for many families and communities when we were working towards suppressing cases, dealing with manageable breakouts and when Scotland appeared to be leading the way. However, we have seen dangerous variants form and take hold here – we must learn and ensure that this can never happen again. The slower our response to the recent, drastic, increases in COVID19 cases, the greater the risk of a variant which undoes the good work behind the vaccination programme.

There are thousands now whose life will be purely focused on survival with the trauma that this brings. The Scottish Government has repeatedly stated its commitment to a human rights-based approach, but the decisions being taken, and the apparent inaction as COVID19 cases rise, undermines this commitment to those with pre-existing conditions, disabled people and those caring for them.

We are therefore writing to our Government, to our political leaders, openly to the scientific community, and others in power to ask:

• Are we still pursuing a zero COVID strategy? If not, what is the scientific evidence we are following? If so, what measures will be put in place to get us back on track?

• How are we going to respond to the inequalities which will become more entrenched if we are indeed to ‘live with COVID’?

We appreciate that people are desperate to return to “normal”, but normal was already not working for huge numbers of Scotland’s population. We want to see COVID19 controlled as far as possible, so we can live a healthy and safe life long-term, rather than the inevitable peak in cases, return to lockdowns and the overwhelming of our healthcare system and other public services.

We do not want to see more people being lost to this dangerous virus.

Many of us are taking decisions to impose our own restrictions or even return to shielding with the current case numbers. This is unacceptable and is an illustration of how certain communities and groups of people in Scotland are being overlooked. The sacrifices of far too many people must matter. The lives lost must count. Let’s work together to make things better.

Signed:

Lynn Williams, unpaid carer and campaigner

Talat Yaqoob, unpaid carer and campaigner

Julie Johnstone, unpaid carer and campaigner

Alison McGinley, unpaid carer and campaigner

Lucy Dolan, unpaid carer and campaigner

Fiona Fisher, unpaid carer and campaigner

Sandra Webster, unpaid carer and campaigner

Shubhanna Hussain-Ahmed, unpaid carer and campaigner

Linda McCafferty unpaid carer and campaigner

Katy Styles, We Are Carers campaign and unpaid carer

Susan Archibald, Disability Rights Activist

Satwat Rehman, CEO of One Parent Families Scotland

Dr. Sally Witcher OBE, disabled person and campaigner

Elizabeth Mistry, former carer and campaigner

Saeema Hayat, support worker and intermittent unpaid carer

Carolyn Fox McKay, campaigner living with chronic illness

Linda Bamford, unpaid care receiver, campaigner, living with lifelong disability.

Celia Sweeney - Social Scientist, activist and unpaid carer

Terri McCue, unpaid carer and campaigner

Melanie Pearson, former unpaid carer and campaigner

Christina Scott, business owner, campaigner & previous unpaid carer

Eve Broadis, business owner and unpaid carer to two adults with learning disability

Dr Pauline Nolan, Head of Leadership and Civic Participation at Inclusion Scotland (Disabled People’s Organisation).

Moira Tasker, CEO of Inclusion Scotland, disabled person and previous unpaid carer

Tressa Burke, CEO at Glasgow Disability Alliance and disabled person

Marianne Scobie, disabled person and depute CEO, Glasgow Disability Alliance

Simon Hodgson, Director, Carers Scotland

Fiona Collie, Policy Manager, Carers Scotland

Sanjeev Mann, disabled person, journalist and activist

Professor Kirstein Rummery, disabled person, carer and campaigner

Giselle Robertson, unpaid carer and campaigner

Dr Sam Smith, CEO at C-Change Scotland, campaigner, (intermittent) unpaid carer.

Brian Scott, Development Manager, Glasgow Disability Alliance

Bill Scott, Senior Policy Adviser, Inclusion Scotland

Rhona Neill, Service Manager, People First (Scotland)

Mairi O’Keefe, founder and patron, Leuchie House

Joanna Barrett, unpaid carer

Shelley Gray, parent of disabled child

Fraser Campbell, writer who lives with chronic illness

Ruth Wilkinson, Scotland Spokesperson, Women’s Equality Party

Michelle Carruthers MBE, CEO of Food Train, supporting 3000 older people living at home in Scotland

Heather Fisken, disabled person and Head of Policy and Research at Inclusion Scotland

Grant Carson, Director, Employment and Housing Services, Glasgow Centre for Inclusive Living (Disabled Person)

Dr Jim Elder-Woodward OBE (Disabled Person) Chair Scottish Independent Living Coalition. Chair Glasgow Centre for Inclusive Living, Vice Chair Inclusion Scotland, Fellow of the Centre for Welfare Reform, Board Member Capability Scotland and the Institute of Research and Innovation in Social Services

Audrey Birt, disabled person and campaigner

Morven Brooks, CEO Disability Equality Scotland

Susie Fitton, Policy Officer, Inclusion Scotland

Dr Angela O’Hagan, Former Director of Carers Scotland

Elizabeth Thomson, unpaid carer

Ellie Hutchinson, gender equality campaigner and parent

Emma Ritch, Executive Director, Engender

Alison Chalmers, unpaid carer

Ivan Cohen, Director, People First (Scotland)

Jamie Cooke, campaigner

Jen Ang, human rights lawyer and campaigner

Anna Ritchie Allan, Executive Director, Close the Gap

Michelle Steel, Director, People First (Scotland)

Etienne d’Aboville, CEO, Glasgow Centre for Inclusive Living (and a disabled person)

Jenny Miller, CEO PAMIS

Kirsten Maclean, People-led Policy Officer, Inclusion Scotland and a disabled person.

Professor Ian Welsh OBE, Chief Executive, Health and Social Care Alliance Scotland (the ALLIANCE)

Lauren Stonebanks, disabled artist, person of colour and campaigner

Laura Finnan Cowan, North Lanarkshire Disability Forum and sibling carer

Karen Procek, unpaid carer and campaigner

Kris Procek, unpaid carer and campaigner

Laura Rutherford, unpaid carer, campaigner, PAMIS Changing Places Campaign Coordinator and member of Falkirk Area Disability Access Panel

Dr Rosalind Cavaghan, gender budgeting campaigner living with chronic health problems

Jennifer Rutherford, unpaid carer and campaigner

Professor Alasdair Rutherford, unpaid carer

Maggie McAlorum, unpaid carer.

Leo Starrs-Cunningham, Convenor, Inclusion Scotland and disabled person

Alison Campbell, unpaid carer, Argyll and Bute

Claire Cairns, Director, Coalition of Carers in Scotland

Clare MacGillivray, Director, Making Rights Real, human rights activist and unpaid carer

Dr Pauline Campbell, unpaid carer

Marlen Smith, unpaid carer

Heather Ford, unpaid carer

Norma Mcwilliam, unpaid carer

Lily Greenan, freelance consultant/researcher and unpaid carer

Jenny Whinnett, family carer, Shared Lives Carer, Deputy Chair Board of Governors PAMIS

Kirsty MacLeod, unpaid carer

Sara Cowan, Scottish Women’s Budget Group

Peter Kelly, The Poverty Alliance

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