I spoke in the Scottish Parliament’s debate to mark Motor Neurone Disease Awareness Day and used the opportunity to underline that we in Scotland should get behind clinical trials and look to provide a dignified support system to those with the condition. A full transcript is available below the video
I thank Christina McKelvie for securing the debate, which allows us the opportunity to recognise the important and inspiring work that MND Scotland is doing. There can be no doubt that Gordon Aikman’s brave and very public battle with this progressive condition, while at the same time fundraising more than £600,000 for MND research, raised public and political awareness of the disease and of the profound effect that it has on patients and their families.
Gordon was full of praise for his specialist nurses and carers and, through his Gordon’s fightback campaign, he succeeded in securing his primary objective of getting the Scottish Government to agree to double the number of MND specialist nurses in Scotland. Those nurses are now paid by the national health service, which allows the charitable donations through which MND nurses were previously paid to be channelled into better support and care and into research for a cure.
We can only imagine how devastating an MND diagnosis is for the individual who receives it. Learning about how the condition progressively impacts all physical functions will be terrifying, and having to come to terms with experiencing a loss of mobility—and indeed with the inability to move at all—is unimaginable. They must understand that intimate personal care will be required, and they must fear that the time will come when communication may come down to electronic aids, signals or even just the blink of an eye. They must understand that intensive support and loss of independence will be inevitable. Then there is the realisation of the impact that that will have on family and friends, who have to witness it all, and the absolute knowledge that they cannot do anything to stop this progressive disease.
The diagnosis has an enormous impact on the lives and wellbeing of the patient’s family and loved ones. There is no certainty about the future, as patients experience the progression of the disease differently and at different rates of acceleration.
Twenty-four-hour care will always be inevitable, and the financial implications of loss of earnings will bring added stress to already unimaginable suffering. Because people face a future of no certainty, psychological and emotional support are essential for the patient and their loved ones. MND Scotland offers important counselling services and complementary therapies for patients and their families. In addition to the excellent care that NHS healthcare professionals give, MND Scotland provides a wide range of other support for patients and their families to help them to cope not only with the physical aspects of the condition—through things such as equipment loan services—but with practical aspects such as welfare and benefits.
Although good progress has been made on several of the objectives that are promoted by the Gordon’s fightback campaign, work is still required in other areas. One of those is the fast tracking of benefits. It is simply not acceptable that people with terminal diagnoses of illnesses such as MND should have to wait long periods before receiving the Department for Work and Pensions benefit awards that they are due and urgently require. I therefore welcome the work that is being done on the Scottish Government’s behalf by the disability and carers benefits expert advisory group to look at automatic and lifetime awards for those with terminal conditions.
With our new powers over social security, the Scottish Government wants to stop the revolving door of assessments and the stress and anxiety that that brings for those with long-term illnesses, disabilities or conditions. In building a new Scottish social security system that is based on dignity and respect, the Government is committed to introducing long-term awards.
As we have heard, MND currently has no cure. Research is vital to help to find a cure and to improve the lives of those who are living with MND. On MND global awareness day, it is right for us to commend the work of MND Scotland. This week, it announced a further £583,000 of MND Scotland-funded research into this devastating illness. It is right, too, that members across the chamber should support the efforts of MND Scotland to increase research investment across the United Kingdom, to bring more clinical trials to Scotland and to ensure that, as a society, we strive to provide a sensitive and dignified support system for those who are living and coping with motor neurone disease.