National Care Service Forum 2023: report

Outputs from the day

Speeches

You can view the speeches from the day on the Scottish Government YouTube account.

Visit www.gov.scot/ncs, where you will find a link directly to the videos.

Panel question and answer session

During the question and answer session, our panel took questions from people who were attending the forum in person and online. Here are some of the main opinions people expressed:

• lived experience involvement must be meaningful and not tokenistic
• people’s lived experience must be prioritised – any failure of the NCS will impact the people who use care the most
• the NCS is the long-term plan – we still need to address the short term issues
• person-led is really important, the individual must choose and control their care
• the NCS needs to create flexible career pathways for the workforce
• there were concerns about availability of staffing to support the future plans of the NCS
• local flexibility is important while also improving standards at a national level
• some people questioned if the Verity House Agreement may change the scope of the NCS
• access to social care should be about needs and not budgets
• it is unclear how drug and alcohol services will fit into the NCS
• if self-directed support had been implemented properly, we would not need a National Care Service
• people with responsibility for the care system are not being held to account to do their job properly

Roundtable discussions

We invited people to choose a discussion topic that they would like to take part in from 5 different topics. We emailed the topics out in advance to allow people to think about which one most interested them.

The topics reflected areas people told us we should work on further during our regional summer events earlier in 2023.

These were the topics discussed:

• social care support should follow people and their friends and family through changes
• prevention is important too
• needing care support should not feel unusual or stigmatising
• shared decision making is needed at all levels
• we must be careful not to exclude anyone as we develop the National Care Service

Stakeholder representatives and Scottish Government staff facilitated the discussion groups and took notes of peoples’ views and insights.

Facilitators came from these organisations:

• NHS Greater Glasgow and Clyde
• Alzheimer Scotland
• Hansel.org.uk
• COSLA
• Allied Health Professions
• NHS Education for Scotland
• Change Mental Health
• Coalition of Carers Scotland
• Health and Social Care Alliance
• Just Right Scotland
• CEMVO Scotland
• Care Inspectorate
• Children in Scotland

Findings by topic

‘We must be careful not to exclude anyone as we develop the National Care Service (NCS)’

Discussions around this topic highlighted groups who have not had as much opportunity as others to get involved in designing the NCS. There was also discussion around how these groups could be better involved.

These groups included:

• personal assistants (PAs)
• volunteers
• people with dementia
• Gypsy/Travellers and migrants

Many people raised issues around PAs being involved in NCS design and the barriers they may face.

This could be due to:

• PAs being registered as individuals and not organisations
• PAs not being unionised and not having a collective voice

The level of representation for frontline carers and unpaid carers was also discussed.

People felt that volunteers were underrepresented in the co-design of the NCS. Volunteers can often play an important role across a range of services and help reduce loneliness and isolation. They can also bring innovative ideas to service delivery.

We also heard that some people with dementia feel excluded from the design of the NCS. The same is true for some unpaid carers who live with people who have dementia.

Other groups that people felt are not involved enough in NCS design include the Gypsy/Traveller community and migrant communities. People felt these groups needed proactive engagement to raise awareness of services and opportunities to influence their development.

This engagement could involve:

• advocacy
• communications strategies
• face-to-face engagement

Many people highlighted the important role advocates can play in helping people to have a voice. The possibility of additional training and support to enable advocacy to reach further into communities was also discussed.

There was discussion around the need to have communications strategies in place that provide both accessible communications and a choice of engagement channels.

People also told us that more could be done to raise general awareness through more public media campaigning. We also heard that accessible formats such as easy read are important but should be of a high standard.

There was discussion on face-to-face engagement. People felt it is important for many groups as a way to engage in co-design activities, as well as to reach communities that might not realise the NCS could affect them.

Organisations that are already embedded into communities are an important link with people who might benefit from engaging in an environment that suits them.

The link between trust in public institutions and relevant and accessible co-design opportunities was also raised. Effective co-design was seen as a mechanism to help rebuild trust in places where it was possibly diminished.

‘Care and support should follow people and their friends and family through changes’

Many of the groups discussing this topic focussed on the importance of sharing information between professionals, and people accessing and providing social care support. There was also discussion around the best way to do this.

Discussions covered areas of this including:

• guidance around GDPR
• the benefits of a care record
• communications
• collaboration
• transitions

Some discussions explored how to improve confidence and understanding of what information can be shared. Possible solutions included clear guidance and training for health and social care workforce around GDPR legislation.

Many people talked about the benefits of a centralised system of information sharing. This included the possibility that this could be achieved by an integrated health and social care ‘record’.

Several groups discussed the communication needs people accessing social care support might have when they are undergoing changes in social care support.

Some groups explored how processes might be improved. For example, to provide a single point of contact through social care support service transitions or the ability to meet with a new social worker before moving to a new area.

Other groups discussed how contact plans following transitions between services might ensure regular and proactive follow-up communication. Another suggestion was that the NCS could support the concept of peer support groups or transition teams to help manage transition points.

There was discussion about the use of language and how it is important when helping to support people through changes. There was a suggestion that a future NCS programme could have an inclusive communications team, similar to Social Security Scotland, and a working group to guide and support this work.

People also told us the use of the word ‘outcomes’ can feel dehumanising.

There was also some discussion around improved collaborative working. This could involve services being based in the same place and more collaboration with social workers.

Some people highlighted that all of these suggestions would also support transitions from child to adult services, as well as moves geographically.

However, people highlighted that in the case of child to adult transition, the work to plan and manage the transition effectively needs to start a long time before a young person reaches the age of 18.

‘Shared decision making is needed at all levels’

Discussions on this topic covered several areas around NCS decision-making. These included:

• communication
• shared responsibility
• representation
• bureaucracy

Several groups spoke about how open and regular communication is key when decisions are made about how the future NCS might work.

The link between insights gained from engaging with people with lived experience and decisions then taken needs to be clearer.

Several discussions focussed on how decisions should be made about how the NCS will work. These decisions must happen at all levels and there must be the opportunity for different people to be involved.

People with lived experience must also be able to feed in views without the risk of negative impact on their own situation.

There was discussion about reform of Integrated Joint Boards, and the need for the voice of those directly delivering or receiving care to be heard.

Many of the groups discussed the potential for a NCS Board and what this might mean in terms of enabling shared decision making. Many people told us this should have representation from people with lived experience. This representation should be meaningful and not ‘tokenistic’.

People also told us that ‘lived experience’, both in terms of receiving and directly delivering services is not a single viewpoint.

There needs to be a way for groups to feel represented in relation to their shared lived experience.

Board practicalities such as voting rights, selection of representatives, power and gender will need to be carefully considered.

There were several suggestions in the discussion groups around how people with lived experience could meaningfully participate.

People said there needs to be careful consideration about the support structures that can enable this kind of representation. For example, how to manage taking on a role like this alongside a caring responsibility or job.

There were discussions on how people with lived experience must have opportunities to set the agenda proactively, rather than just responding to one. People also told us that attending boards can be intimidating.

It was highlighted that appropriate support would be needed to ensure people will be both confident to participate and able to participate meaningfully. People undertaking a role like this would need to be appropriately supported financially. They would also need support with other responsibilities (such as unpaid caring responsibilities) to help them take part. Appropriate training and ongoing support should also be considered.

Several groups talked about the importance of always aiming to reduce levels of bureaucracy. There was also some discussion about how success might be determined by such a board.

There was a suggestion for a focus to be on targets that demonstrate outcomes that are meaningful to people accessing and delivering services.

‘Needing care support should not feel unusual or stigmatising’

Discussion groups for this topic considered several issues surrounding stigma in health and social care support. These included:

• what can lead to stigma
• how services can increase stigma
• ways to get around stigma

There was discussion in some groups around factors leading to stigma. Some people felt that a lack of understanding about particular conditions, or being a member of a particular community, can lead to stigma. This can then negatively impact people’s wellbeing and access to services.

Personal examples were shared that covered neurodiversity, the LGBT experience of social care support, age and the cultural context of different ethnic communities.

There was also discussion about how the structure of services can increase stigma, with several examples given.

One example shared was of social care support services for people experiencing dementia that are designed for elderly people and not young people suffering with the same condition.

Another example was of how processes such as assessment or eligibility criteria can lead to a lack of empathy. Another related example was around the potential positive impact of investing in training such as British Sign Language for staff in terms of reducing stigma.

Practical suggestions were discussed, such as the option for people to have private conversations with social workers away from family members. This would allow them to raise things they might not otherwise feel comfortable doing.

Other suggestions included the role of advocacy for young people, and an improved complaints system.

There was discussion about the connection between workforce morale and empathy. This included how a supported and professional workforce that has parity with the NHS is better able to provide compassionate service.

‘Prevention is important too’

For this topic, discussions centred around several themes, including:

• the link between prevention and awareness
• the importance of human connection
• the role of the third sector
• funding
• eligibility criteria

Several groups discussed how a lack of awareness of prevention services can negatively impact access. In some cases, this was linked to the need for accessible information to be provided at a national level about what was available.

The importance of the human connection was also raised in relation to raising awareness and signposting to preventative services.

Examples were given of the role of social workers in speaking to families and other roles, such as community link workers that could help people to engage with services.

The role of the third sector and community initiatives was widely discussed. Examples given included lunch clubs that can provide an early warning system if someone presents differently or fails to show up, or the role of volunteers in providing companionship.

People also told us that these kind of initiatives help reach people who might not otherwise be connected into family networks, GPs or religious communities.

The complex funding landscape for services was mentioned by several groups. There was a suggestion that competing funding makes it harder to spend on preventative support measures.

Several groups noted that transparency in relation to funding is complex, but also important and that it should lead to better decisions.

There was also discussion about eligibility criteria and the need for them to be reformed with prevention in mind. However, people told us that without them there would be no way to allocate funds.

There was broad ranging discussion about how a future NCS could positively impact change in relation to prevention. Topics covered the potential role for ethical commissioning, and the balance between local flexibility and national standards.

The role that a future NCS might play in terms of education and information sharing around prevention strategies was also discussed.