Coronavirus – What we’ve done
The COVID19 pandemic has presented a range of troubling challenges to people living with MND. Across the Association, we have been working to support people to meet these challenges in anyway that we can. In these testing times, it has rarely been more vital that the voices of people living with MND are heard by those in power. While some of our higher profile campaigns may be familiar to many, the signing of open letters or the submission of evidence to Parliamentary committees may not be. Therefore, we have put together a hub of policy and campaigning activity, to document the entirety of our work during the COVID19 pandemic as we continue to speak up for people living with MND.
Carers and COVID-19
As part of Carers Week, we called on the Government to act decisively to support unpaid carers in undertaking the vital, difficult work they do in these incredibly testing times and encouraged our supporters to take action by signing an open letter and share their experiences of caring for loved ones with MND. In this letter we have demanded an increase in testing for unpaid carers, an increase in Carers Allowance, greater access to PPE and the production of clear guidance as lockdown is eased. The open letter was signed by over 3080 people and it was delivered virtually during Carers Week, on Thursday 11th June, to the Minister of State for Care Helen Whately MP, Deputy Minister for Health and Social Services in Wales Julie Morgan MS, and Northern Ireland’s Minister of Health Robin Swann MLA.
We will continue to work with our Carers Week partners to ensure that carers are supported and have also written jointly to the Department for Work and Pensions calling for an increase in Carers Allowance.
In line with this, we have made our first ever ‘Commitment to Carers’ following an increase in demand for support and information during the coronavirus pandemic.
We’ve committed to developing new support for people who care for a loved one with MND, with a focus on digital and online platforms. This has specifically entailed a pledge:
- To provide support to help carers cope with caring for someone with MND
- To offer opportunities to relieve isolation and improve wellbeing and resilience
- To help carers access services and support provided by others
And for those who need it …
- To help cope with bereavement and loss
See more here.
We wrote a full briefing paper on our assessment of the situation for unpaid carers of people living with MND during the COVID19 crisis. We’ve detailed the challenges facing unpaid carers including in self-isolating and shielding, financial pressures, stagnation in the rate of Carers Allowance, inadequate access to PPE, their health and wellbeing, and the repercussions of the Coronavirus Act. For the full briefing paper, see here.
We joined with over 100 organisations in signing a joint open letter urging the government to act as unpaid carers on the frontline of the COVID-19 crisis face increasingly financial pressure. The letter, penned by Oxfam, outlines that failing to ensure carers are protected from poverty would be ‘truly unforgiveable’ and have warned that inadequate social security systems and wages have left all carers in a dire financial situation. Find out more here.
We co-signed a statement from The Coalition of Carers which called on the NI Executive and key departments to take action during and after the pandemic to increase awareness of informal carers and address their operational and strategic needs as an important part of our community. The statement issued a number of demands including:
- Ensure that carers rights are maintained, and the vital role of unpaid carers in supporting the health and social care system is clearly recognised.
- Produce an action plan to restore essential frontline services and support carers to transition back to some sort of normality as lockdown eases and while COVID-19 remains present.
- Ensure key work areas continue in exploring the needs of carers and strategic planning to meet these needs. Carers and those with lived experience of caring should be involved in those conversations.
- Identify carers as a priority group requiring emotional support services; and develop an agreed pathway for them to access interventions such as psychological talking therapies.
- Invest in third sector organisations providing advocacy and other key support services to carers.
Together with 16 other organisations, we co-signed a letter from the Wales Care Alliance to the Welsh Government, sharing the concerns unpaid carers are raising with us, how we are responding as national organisations and what our joint response as an Alliance should be. Amongst many things, the letter highlighted a need for clarity on the government’s guidance on carers rights, our concerns on the reduction in support and care planning, the impact of COVID-19 on young carers, the impact on employment rights and the financial security of carers, and a call for clarity on social isolation, distancing and shielding.
Our Director of External Affairs, Chris James, attended a virtual roundtable event in early June along with five other national charities supporting Carers Week 2020, sponsors, NHS England, ADASS and government representatives, including the Care Minister, Helen Whately. This was a great opportunity for us to highlight the additional pressure on unpaid carers during the pandemic and the support they will need in the future and crucially, the group discussed the level of visibility and recognition of carers and how this could be improved, the importance of getting the right information and advice to carers, and increasing support for working carers.
We supported two carers of people living with MND to attend the Care for a Cuppa events that Carers UK hosted during Carers Week. The virtual event was attended by 9 unpaid carers as well as the Minister for Care, Helen Whately, the Minister for Disabled People, Health and Work, Justin Tomlinson, and the Shadow Minister for Health and Social Care, Liz Kendall. This was a great opportunity for carers of people living with MND to engage directly with front-bench MPs on their experiences of caring.
Along with 91 other organisations, we signed an open letter, delivered to the Work and Pensions Secretary, Therese Coffey, and to the Chancellor, Rishi Sunak, calling for better financial support for unpaid carers who have faced rising costs during the pandemic.
Supporting the Fairer for Carers campaign launched by Carers UK, we urgently called for:
- An additional supplement to match increases in Universal Credit that have rightly recognised the challenges people on lower incomes have during the pandemic of additional costs. We are also calling for accompanying rises to the Carer Premium and Carer Addition, and for this payment to be made to carers with an underlying entitlement to Carer’s Allowance, so older carers on low incomes can also benefit.
- For the earnings limit for claiming Carer’s Allowance to be raised, to ensure those juggling work and care on low pay also receive support. The current earnings threshold does not align with the National Living Wage (NLW), meaning a carer can only work for less than 15 hours per week without losing eligibility to Carer’s Allowance. The earnings limit should be raised from £128 a week to at least £139.52 for 2020/21 and should be linked to the NLW in future years.
We have continued to work as part of the Care and Support Alliance (CSA) and to contribute to its work, which has been focused on the impacts of the Coronavirus Act on social care and wider social care issues during the pandemic. The issues that have arisen have re-emphasised our underlying concerns about the current state of social care in the UK and the need for urgent reform.
We called on the government to include those living with MND in their group of 'clinically extremely vulnerable' people to shield from COVID19. The government created a list of clinically extremely vulnerable persons designed to better shield and protect those with certain conditions during the COVID-19 outbreak. Those on the list have been granted certain protective measures such as priority access to supermarket deliveries, food parcels if they needed them and home deliveries of medicines. While we were not successful in our attempts and unable to move the Westminster government from its position on the matter; we believe it is essential to continue to raise awareness and ensure all people with MND get access to the support they need during the COVID-19 outbreak. So we have done the following in response:
- We have worked with our Care Centres and the Association of British Neurologists to ensure clinicians register their patients with MND as clinically extremely vulnerable.
- We have worked with the Department of Health and Social Care and the Chief Medical Officer's office to engage with the Royal College of General Practitioners to encourage GPs to register their patients with MND and provide training to GPs.
- We ensured people with MND and their carers were made aware of the NHS volunteer responders programme and are registered.
While we were hugely disappointed with this news, there was some notable positives to take from the campaign. Our fantastic campaigners in Northern Ireland secured a win with the Northern Irish Executive breaking from their Westminster and Welsh counterparts by adding people living with MND onto their list of clinically extremely vulnerable people. The campaign also raised the profile of MND with the general public and politicians and it was specifically praised by several MPs. It also resulted in a record number of supporters emailing their MP in the effort within a matter of days which also points to the campaign attracting a host of new supporters to the Association. In total, over 5200 supporters, more than 120 MPs and nearly 40 clinicians urged the government to get MND on the list.
Find out more here.
Submitted written evidence on the DWP’s response to the coronavirus outbreak; and to the Women and Equalities Committee's inquiry on COVID19
We responded to a number of different Select Committee inquiries relating to Covid-19. We have submitted evidence to the Work and Pensions Committee concerning the DWP’s response to the coronavirus outbreak inquiry and to the Women and Equalities Committee regarding the impact on people with protected characteristics inquiry. Responding to these inquiries has ensured that the impact of Government measures relating to Covid-19 are understood from an MND-perspective. In the case of the former inquiry, our submissions have fed into the Work and Pensions Committee’s inquiry report. In this report, the committee has made a recommendation on the need to uplift legacy benefits in line with Universal Credit and included a section concerning the Special Rules for Terminal Illness (SRTI), another area in which we’ve been campaigning. In this section, where the Association is named, the report recommends the DWP provide clearer guidance on the requirement of DS1500s, the publication of the average processing times, by month, for claims made under the SRTI, and expresses its interest in the matter of how well the SRTI are functioning as a whole.
At the beginning of the pandemic, the policy team, namely Alex Massey and Daniel Vincent, put together a detailed, exhaustive position paper, trying to provide a comprehensive summary of the issues in relation to Covid19 and some of the key policy areas we work on: Health, Social Care, Carers and Welfare - and detailing the impact on people with MND. In the document we’ve given some background on each area, detailed our thoughts on the issues that have arisen, and posed some key questions.
We hosted the first ever online meeting of the All-Party Parliamentary Group (APPG) on MND to discuss the impact of COVID-19 on the MND community. MPs heard a discussion from panellists on the ramifications on medical research and people affected by MND, and from Jessica, who gave a sobering account of caring for husband Shaan, who is living with MND. Find out more here.
Co-signed a letter to George Eustice MP, the Secretary of State for Environment, Food and Rural Affairs
We co-signed a letter with disabled, older people’s and unpaid carer’s charities regarding access to food for vulnerable people during the Covid-19 crisis. The letter called on the government and supermarkets to undertake a number actions including:
- Supermarkets to allow anyone at increased risk from Covid19 and their carer access to home deliveries
- Supermarkets to better adapt services to meet the needs of older and disabled people and carers including the introduction of automated processes online
- Government to provide clarity about alternative sources of support for people in vulnerable circumstances that can’t access supermarkets or home deliveries
- Government to also involve our organisations in the work it is undertaking to identify those in need and the measure enacted to support them.
Submitted written evidence to Environment Food and Rural Affairs Committee – COVID19 and food supply inquiry
We worked with the Department for Environment, Food and Rural Affairs and the DHSC regarding the support available to the wider vulnerable group to ensure that anyone who is not registered as extremely vulnerable can still access the help they need, such as supermarket delivery slots. We are working directly with supermarkets to secure delivery slots for people living with MND. Along with 24 other charities, we’re trying to influence supermarkets and the UK government by asking them to look at how they can meet the needs of people with long-term conditions who don’t fall into this extremely vulnerable group. People can now use the NHS volunteer responder scheme to get help with food and medication deliveries.
We drafted a response to a Wales Senedd inquiry into the impact of the Covid-19 outbreak, and its management, on health and social care in Wales. Our response was detailed and far-reaching, and it included our concerns regarding the effect of amendments to the Social Services and Well-being (Wales) Act 2014 on carers; and a call to review the support available to carers with the provision of clear communication and guidance on key issues of concern, including access to PPE. The response also detailed a call to NHS in Wales to record and publish the service changes in healthcare provision that have taken place in order to ensure ongoing and to resume normal service standards as soon as possible and to provide a timeline for this to happen; as well as a call to issue clear guidance on the easing of shielding to help the families and carers of vulnerable people, including those living with MND.
As a Disability Benefits Consortium member, we called on the Government to urgently increase disability benefits by the same £20 as Universal Credit after the Disability Benefits Consortium released a report on 27th April showing the cost of the COVID19 emergency for disabled people. Later, on 3rd June, we wrote to the Chancellor of the Exchequer, Rishi Sunak, to extend the emergency £20 COVID19 increase to ALL out of work benefits. Find out more here. As a member, we also ensured that an update on the status of the review into the Special Rules for Terminal Illness (as a part of our Scrap 6 Months campaign) was requested in the DBC's letter to Department for Work and Pensions Secretary, Thérèse Coffey.
We signed an open letter, penned by Scope, calling on the Prime Minister to protect disabled people’s rights and needs at every turn in the Government’s recovery plan. The letter called on the Government to work with us to:
- Factor disabled people’s needs into every plan and change in regulations around the easing of lockdown from the start.
- Prioritise the vital National Disability Strategy.
- Ensure it provides a clear plan to mitigate existing inequalities the pandemic has further magnified.
It is crucial the Government provides a new deal for disabled people to show they won’t be forgotten in the Government’s recovery plan, and beyond.
The Neurological Alliance carried out a survey collating information on the effects of the coronavirus pandemic on people affected by neurological conditions and we encouraged all those living with or affected by MND to participate in the survey.
As we collectively consider how best to restart services and ‘recover’ from the pandemic, the Neurological Alliance wanted to make sure the experiences of people with neurological conditions are at the heart of those decisions.
As a result of the findings of this survey that over 7 in 10 respondents reported delays to their medical appointments as a result of COVID19, we joined over 40 other patient organisations in writing to Simon Stevens, CEO of NHS England NHS Improvement, urging him to set out plans to restart neurology services.