National Carers Strategy

Baroness Fraser of Craigmaddie Excerpts

Tuesday 19th November 2024 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I declare an interest as chief executive of Cerebral Palsy Scotland. Disabled adults of working age tell me that one of the reasons they have to fall back on family and unpaid carers is the dire shortage of availability of good PAs to help them work and live. Can the Minister confirm that the national carers strategy will look at access to PAs for working-age adults?

[Baroness Merron (Lab)]

I do have to say to the noble Baroness that I have not committed to a national carers strategy. However, in our joined-up approach, we will certainly be looking at what is needed. That will be very much part of our considerations on the workforce strategy, which Minister Karin Smyth will be leading on. It is crucial to the delivery of services.

Palliative and End-of-life Care: Funding

Baroness Fraser of Craigmaddie Excerpts

Wednesday 4th September 2024 Lords Chamber

[Baroness Merron (Lab)]

My noble friend is absolutely right, and I certainly agree with the points she has made. Those who care for their loved ones are absolutely crucial to ensuring that the right care is provided in the right place and the right way for that person. Everybody is individual, and we want a society where everybody receives the right kind of care at the end of their life. That should be a time of dignity, and we want to provide that.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, people with neurological conditions face many barriers to accessing palliative care, even though it could do them a huge amount of good. The answers to this are better identification of individual needs and better collaboration between palliative and neurological services. Can the Minister assure me that she will look at this? There is a great inequity in access to palliative care. I declare my interest as a chair of the Scottish Government’s neurological advisory committee.

[Baroness Merron (Lab)]

The noble Baroness is quite right to raise this, and I can give her that assurance. She raises the point about identification of people with specific needs. I am interested to see that there are some very good examples of local good practice—for example, in Dorset, where they have proactively gone out to identify who needs palliative and end-of-life care. By so doing, they have raised the percentage of the local population who should be receiving it. That is a model we will want to look at. With regard to those who have particular needs, as the noble Baroness describes, I think that model will be helpful too.

Covid-19 Inquiry

Baroness Fraser of Craigmaddie Excerpts

Tuesday 3rd September 2024 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I am delighted to contribute to this debate on the resilience and preparedness of the United Kingdom. I take the point made by the noble Baroness, Lady Thornton, that this is only the first of a number of modules, but it came as no surprise to me that the module 1 report concluded that:

“Emergency planning generally failed to account sufficiently for the pre-existing health and societal inequalities and deprivation in society”,


and that there was

“a failure to engage appropriately with those who know their communities best, such as local authorities, the voluntary sector and community groups”.

I declare my interests as laid out in the register. I was at the time of the pandemic, and still am, the chief executive of Cerebral Palsy Scotland, as well as chair of the Scottish Government’s National Advisory Committee for Neurological Conditions. I have also given much written and verbal evidence to the Scottish Covid inquiry under the chairmanship of the honourable Lord Brailsford. I share the frustration of the noble Lord, Lord Browne of Ladyton, that politics got in the way of the Governments of Holyrood and Westminster working together, and I slightly despair that we need to have two separate Covid inquiries running at the same time. The conclusions drawn in this module by the noble and learned Baroness, Lady Hallett, resonate with my experience and the experience of people with cerebral palsy during the pandemic, and I will concentrate on that today.

Right from the very earliest days, cerebral palsy was cited by the UK and devolved Governments and in the media as being a specific condition that left you more at risk from Covid-19. This messaging, which was based at the start on very little clinical evidence, continued all the way through to the rollout of the vaccination programme, when people with CP were able to get their vaccinations early. However, it was coupled with the cessation of support services that this population relies on, which meant that people with CP and their families were left with considerable anxiety regarding what they should and could do to remain well.

In March 2020, with no consultation with disabled people themselves or the organisations that support them, all face-to-face services ceased. Community physiotherapy, occupational therapy and other AHP services were not deemed “essential”. Some adults with CP moved back to live with their sometimes rather elderly parents and family for lockdown, and some were too anxious about infection to allow carers into their home.

The inquiry’s report says that there was

“a failure to appreciate the full extent of the impact of government measures and long-term risks”

from the Covid pandemic

“on … those with poor health or other vulnerabilities”.

These groups were already vulnerable, and yet what was essential to keep them well was denied them because such services were not deemed essential by those who were making the decisions. This reduction in services, together with restrictions that left many struggling to manage their condition, caused isolation and increased anxiety that we are still struggling to recover from today—over four years later. Medication, for example, was seen as a priority but physical therapy, occupational therapy or speech and language services were not, yet for people with CP, these are as vital to access on a regular basis as medication is for other conditions.

The closure of schools in particular had an extremely detrimental effect not only on children with CP but on their families. Anxiety levels about the risks to children with CP were such that many families did not feel confident to send their child into school even if a place was available. However, school time for these children is more than just about providing education. It is where therapy appointments happen, it benefits mental health and well-being through opportunities for social interaction, and it provides vital respite for family carers. Many children with CP have one-to-one support for their learning in school, yet families were left to cope unsupported with the demands of physical care needs in addition to educational needs. Many parents also had to juggle the requirements of non-disabled siblings or potentially trying to work from home. It is unsurprising that this stress had specific physical and mental health consequences.

The problems caused by the lack of understanding of people with CP were starkly illustrated by the implementation of shielding. Despite the Scottish Government reaching out to organisations such as Cerebral Palsy Scotland, there was no coherent approach. Due to a chronic lack of data on this population, people with CP could not be identified centrally, so many approached their local GP or paediatrician, allied health professionals or social workers to ask to be shielded, and professionals would err on the side of caution and suggest that people did shield without much thought for the consequences. Many more people with CP chose to voluntarily class themselves as “shielding” compared with the actual numbers who received an official letter. Those people who received an official letter tended also to have other conditions, which meant that they were possibly more vulnerable to Covid as a result of comorbidities rather than CP, and they were certainly more visible to health professionals and easier to identify. However, it added to the picture of inconsistency, and we know that people fell through the gaps.

People did not understand the logic of who was or was not meant to shield, or where to go or who to ask for trusted information. The picture reported to Cerebral Palsy Scotland illustrated many variations across the country and that health and social care professionals, as well as people themselves, did not feel equipped to take decisions about their own level of risk.

I commend particularly the inquiry report’s recommendation 5 on improving data and research for future pandemics. I was glad to hear the noble Baroness, Lady Merron, address in her opening remarks actions that the Government wish to take on this. People with cerebral palsy are invisible to service providers. The lack of a cerebral palsy register meant that, although they were very visibly classed as vulnerable, health and care and educational professionals did not have adequate data to identify where these people were within their communities and, given the umbrella nature of the condition, it was impossible for them to identify who actually was vulnerable and provide them with adequate support, as opposed to those with milder CP, who could be reassured and who could have been at no greater risk from Covid than the rest of the population.

I hope the Government will take the inquiry’s recommendations seriously and will work in partnership with the devolved Administrations to improve our data and planning, and thus our resilience. Unfortunately, people with cerebral palsy remain invisible today, and I would welcome the opportunity to work with the Minister and her team to ensure that policymakers, service providers and professionals can identify this population, so that never again will decisions about them be made in isolation, with such devastating long- term consequences.