Support MND carers

We called on the Government to relieve the immediate pressures being faced by MND carers throughout the COVID-19 crisis.

Due to the coronavirus outbreak, unpaid carers have been put under increasing strain and this has only been exasperated by the reduction and disruption of the health and social care system and the difficulties that social distancing requirements pose.

People with MND are among some of the most vulnerable to COVID-19 and unpaid MND carers continue to provide a vital but often invisible frontline role to ensure those they care for continue to remain safe. On top of undertaking extra care and support to their loved ones with little respite or support during this time, carers have been tackling other challenges such as managing their own underlying health conditions, coping with financial worries due to higher food costs and household bills, their children returning to school and managing their own paid work commitments.

As a result of the MND Association’s concern about the condition of unpaid carers, we  called on the Governments of Westminster, Wales and Northern Ireland to act decisively to support carers in undertaking the vital, difficult work they do in these incredibly testing times.

We asked our supporters to join our campaign by signing our open letter and by sharing their experiences of caring for their loved ones with MND. We were amazed at the support that this campaign received and so we want to thank all 3709 of you who signed our open letter.

With your support we called for:

  • An increase to Carers Allowance
  • Improved access to testing
  • Improved access to PPE
  • Provision of clear guidance that helps protect unpaid carers and those they care for

In July 2020, we received responses to our open letters. While the Welsh Government provided some tangible proposals to better support unpaid carers in their jurisdiction, the Association was disappointed by the response from Helen Whatley, the Minister of State for Social Care which failed to address the vast majority of our asks. This response did refer to testing and PPE but not in respect of the specific points that we made, and referred us to the Department for Work and Pensions for matters concerning Carers Allowance.

In the response from Julie Morgan, Deputy Minister for Health and Social Services, the Welsh government emphasised their commitment to maintaining carers’ rights. The letter highlighted the following actions that the Welsh Government has taken, or will take, for carers:

  • Committed an additional funding of £50,000 to Carers Wales from the beginning of June to provide unpaid carers with more professional and peer support
  • Included representatives from carers organisations on the dedicated task and finish group to handle the COVID-19 crisis and its implications.
  • Met with the Carers Ministerial Advisory Group at the end of June to consider plans for supporting all carers as we emerge from lockdown.
  • Granted £2.1 million worth of funding to three carer specific projects in April under the new Third Sector Sustainable Social Services grant scheme.

We will continue to deliver on our commitment to carers and follow up with a wide range of carers organisations and coalitions of which we are a member, to ensure the voice of MND carers are heard by decision makers. These coalitions include the Care and Support Alliance, the Welsh Neurological Alliance, the Wales Care Alliance and the motion advocated by Oxfam GB to support carers in the UK.   We have written jointly, with other carers’ organisations, to the Department of Work and Pensions and the Chancellor on Carers Allowance.

Thank you once again for all your support.

Read UK Government Response

Read Welsh Government Response

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262