Chamber and committees

Research work undertaken by the University of Edinburgh and Marie Curie in 2019 found that on average 69% of people had a KIS in place at time of death. The study reported that this was an encouraging improvement on previous years but that more work was needed.

For people to get the care that is right for them, it is important that medical professionals have early and sensitive conversations about their care wishes should the worst happen. That is why from the outset of the pandemic, we encouraged GPs to contact those registered with their practice who may be vulnerable and required to shield to help ensure that appropriate care planning was in place and recorded. Our guidance emphasised the importance of completing a KIS following such discussions to help ensure people get the care that is right for them.

We have also produced further resources and guidance on having Anticipatory Care Planning conversations which we believe will be helpful to GPs in having successful discussions with patients for whom this is appropriate, and allowing them to record the outcome in their KIS.

We want people to get the high quality palliative and end of life care and support that is right for them. For most people this will be at home or in a homely setting.

Due to the challenges associated with the pandemic, we are seeing more people being cared for in community and homely settings. That is why throughout this year we have provided additional resource to Integration Authorities to help ensure that those being cared for in community settings can get the care that is right for them.

Most recently, in November 2020, we published our Adult Social Care Winter Preparedness Plan which includes a focus on supporting people to get the care that is right for them when time becomes short. To support this work, we provided Integration Authorities with an additional £72 million to help ensure that those being cared for in the community, including those with palliative care needs, have access to the right services at the right time.

This information is not collected centrally.

The Key Information Summary (KIS) is a collection of information, extracted from a patient’s general practice record, that may be helpful to attending medical professionals in providing treatment. As this information is stored via GP systems, it is not possible to centrally collect information in the manner described.

We want people to be able to receive high quality end of life care in the setting that is most comfortable for them. For most people this will be at home or in a homely setting.

However, there are significant challenges associated with gathering views from those who have had a loved one supported by palliative care services to support further improvement work. These include the difficulty in gathering a suitable sample size to make the findings useful for service improvement, the need to put in place support arrangements for those contacted, and most significantly the ethical requirement for the benefit of those findings to outweigh the distress caused by surveying the families of the recently deceased. This a particularly important consideration during the pandemic.

As part of our wider work to learn from experiences during the pandemic, we are working with Public Health Scotland and other key stakeholders to identify options on how best to establish a more coherent picture of the quality of end of life care, which can also be used for improving future service delivery.

Scottish Government published updated care home visiting guidance on 17 th November and 14 th December which relates to adult care homes including younger adults where they are in an adult care home.

This builds on existing visiting guidance first published in August, which outlines recommendations for safely resuming visiting in a staged way, both by family and friends, as well as those providing spiritual, holistic and physical and mental care and aligned to Scotland’s Strategic Framework Levels.

For younger adults in other types of residential care settings for example supported accommodation, Health Protection Scotland guidance on COVID-19: Information and Guidance for Social, Community and Residential Care Settings applies (excluding Adult and Older People Care Home settings). Infection Prevention and Control Addendums have also been published for both Care Homes and Community Health and Care settings. The guidance can be found here:

1. https://www.hps.scot.nhs.uk/web-resources-container/covid-19-information-and-guidance-for-social-community-and-residential-care-settings/

2. National Infection Prevention and Control Manual: Home (scot.nhs.uk)

SIGN Guideline 161 – ‘Managing the long-term effects of COVID-19’ provides healthcare professionals with recommendations on the monitoring of people with ongoing symptomatic COVID-19 and post-COVID-19 syndrome. The approach to monitoring will be tailored to each person, given the wide range of care needs that may be experienced.

NHS Scotland is delivering care tailored to the individual needs of people experiencing the longer term effects of COVID-19, with clinicians providing support based on presenting symptoms. This will continue to evolve as scientific understanding of the underlying mechanisms behind these longer term effects develops. In addition, we continue to explore the use of a digital tool to support symptomatic COVID-19 patients in higher risk groups to self-monitor their condition at home. A test of change is underway across a number of Health Boards that would provide them with support and advice on any possible deterioration in their condition using a pulse oximeter.

On 5 October 2020 the Scottish Government Chief Scientist Office launched a research funding call into the long-term effects of COVID-19 infection. Following an independent expert review process, 9 research projects have been selected for funding with a total commitment of around £2.5 million. These projects cover a wide range of approaches and address questions that will greatly increase the clinically relevant knowledge base on long-term effects of COVID-19 infection.

Further information is available from the CSO website: https://www.cso.scot.nhs.uk/outcome-of-the-funding-call-for-scottish-led-research-on-long-term-effects-of-covid-19-infection/

We are hugely grateful to the efforts of dedicated NHS staff as they continue to respond to the pandemic. On 30 November 2020, as a thank you for the outstanding efforts of NHS staff in these most challenging times, the First Minister announced a one-off pro-rata thank you payment.

I meet regularly with the Royal College of Nursing through their role in STAC Secretariat, most recently on the 30 December 2020, where all issues related to pay can be discussed. I remain absolutely committed to securing a pay settlement for 2021/22 that is fair, affordable, and sustainable and my officials are working with employers and staff side to agree an approach and timetable for securing a pay deal for NHS Agenda for Change staff in 2021/22.

Nurses in Scotland are the best paid in the UK. In 2020/21, nurses received a 2.95% pay rise as part of the current three-year NHS Agenda for Change pay deal, which has delivered a minimum 9% pay increase for most staff, and over 27% for some still moving up their pay scale. This is in excess of the 1.67% pay uplift for NHS England nurses.

The Scottish Government is doing everything it can to ensure we have sufficient numbers of staff on the ground who are well supported in these challenging times. Since September 2006, Qualified Nurses & Midwives (including Interns) have increased by 8.7%, or 3,564.5 WTE, from 41,026.2 WTE to 44,590.7 WTE. We continue to work with health boards to ensure that nurses receive the clinical professional support they require, and that psychological and wellbeing support is in place at both local and national levels. These measures include the National Wellbeing Hub and a National 24hr phone line for NHS and social care staff.

NHS Scotland does not supply staff with disposable hijabs, but staff are allowed to wear religious garments including hijabs, provided patient safety is not compromised.

These must be washed and/or changed between each shift or immediately if contaminated and comply with additional attire in, for example, theatre settings.

There is guidance for staff which explains how to properly and safely launder uniforms. There is also guidance on PPE included in the National Infection Prevention and Control Manual .

As we have indicated previously, the Neurological Care and Support Framework for Scotland 2020-25 is in place to improve support for people living with neurological conditions. This includes ensuring they are partners in their own care, improving co-ordinated health and social care and support, ensuring high standards of person-centred, and safe care and support, ensuring timely access to services and building a sustainable neurological workforce. £4.5 million of funding is being invested over 5 years to implement the Framework’s commitments. While the Framework is not condition specific, it covers common themes affecting people with all types of neurological conditions, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and this condition is recognised as being covered by the Framework.

Under commitment 12 of the Framework, we are prioritising work to improve the recording of neurological conditions in people’s routine health and care records, which in turn will inform available data about the prevalence of neurological conditions. The incidence, prevalence and case definitions of ME remain contested worldwide, which presents a practical challenge in establishing the prevalence of ME. Our work takes account of difficult to diagnose conditions, such as ME, which is a factor contributing to the variation in their recording in health and care records. Improving digital platforms, including those used in primary care, form part of the Digital Health and Care Strategy being delivered and will be accompanied by training to ensure consistent recording of all neurological conditions. We are also looking to develop a data strategy across health and social care for the first time, which will benefit those living with ME/CFS.

In October 2020, we published a list of projects funded through the Neurological Care and Support Framework. One of which is to fund the creation of an online ME/CFS module for health care professionals. This work is led by a partnership of ME third sector/patient organisations and aims to support person-centred care, informed by good practice and current research.

The Scottish Public Health Network (ScotPHN) ME-CFS healthcare needs assessment: Briefing was published this month. We are considering the recommendations within this report alongside the Gathering Views report on ME/CFS by Healthcare Improvement Scotland Community Engagement; and the revised NICE guideline that is due to be published in April 2021. These form part of actions the Cabinet Secretary set out in evidence to the Public Petitions Committee (PE1690) on 19th December 2019 and in her written response on the 25 August 2020.

We are already taking action to ensure that people in Scotland receive the right care at the right time and place. Therefore, our ambition is for people living with ME/CFS to have access to the support they may need for assessment, diagnosis and care in a setting that is as close to their home as possible. At present, it is our belief that instead of setting up separate clinics, this can be best achieved by enhancing and better co-ordinating existing services in primary and community care, using the multidisciplinary and person-centred support that people may require. This further links to wider work involving the Rehabilitation and Recovery Framework.

I refer the member to the answer to question S5W-34260 on 20 January 2021. All answers to written parliamentary questions are available on the Parliament's website, the search facility for which can be found at http://www.parliament.scot/parliamentarybusiness/28877.aspx .

Additionally, as I stated to the Health and Sport Committee in my letter dated 18 December 2020, it is not possible to be explicit on the date for the public consultation, given this is part of a wider process of engagement and input which has been placed on hold to prioritise resource for the pandemic. When capacity becomes available the public consultation will be an integral part of that process.