Covid-19: People with Neurological Conditions

Baroness Finlay of Llandaff Excerpts

Thursday 27th May 2021 Grand Committee

[Baroness Finlay of Llandaff (CB) [V]]

My Lords, I declare that I am a patron of the Motor Neurone Disease Association and a vice-president of both Hospice UK and Marie Curie. We are all most grateful to the noble Baroness, Lady Gale, for securing this important debate because the pandemic has had a catastrophic effect on services.

Most hospice services are largely funded through charitable donations—that is, hands in pockets from the thousands of families around the country who are eternally grateful for the excellent services that they received and continue to receive. However, in the pandemic, the money dried up. The Government were extremely supportive and provided funding but there is a real worry that, over time, the overall level of donation will not return to previous levels.

We have seen delays in support procedures for patients with motor neurone disease, such as gastrostomy, which can be essential for nutrition and hydration. Two-thirds of MND specialist centres reported that end-of-life care has been compromised during the pandemic. Some hospices did not have the required level of specialist trained staff to admit patients using non-invasive ventilation or even suctioning or were confused about the specific PEE they needed, and beds closed, highlighted in Marie Curie’s recent report, Better End of Life.

Added to this, the messages from campaigners for assisted dying have been particularly frightening, controversial for some people and at times misleading, especially for those newly diagnosed and coming to terms with their illness. Specialist services do a remarkable job of empowering people to live well, with technology assistance allowing people to continue to work, write books, run businesses and remain active participants in their families’ lives. The Motor Neurone Disease Association signposts people to empower them, as well as driving research forward.

I hope that the Government will confirm that, as the Covid-19 threat is lowered, they will work with NHS England and NHS Improvement, commissioners, healthcare professionals, professional bodies and patient groups to ensure that services are restored to their pre-pandemic levels as soon as possible. Where possible, these services should be improved to plug gaps. This means that NHS England and NHS Improvement must develop a recovery strategy for neurology services, matching—as the noble Lord, Lord MacKenzie, has said—the recovery plan developed for cancer services.

Finally, can the Government confirm that they now recognise that hospices and other palliative care providers are providing a core clinical service that needs secure NHS funding to provide high-quality palliative and end-of-life care for everyone who needs it? That care is needed early in a disease, so that people are adequately supported. This is not just about the last phase of their illness.