Palliative Care Matters for All: Strategy consultation response from SASW

Question 1a. Do you agree with the aims for this strategy?

Agree 

While we agree with the aims, the title ‘palliative care’ suggests that this is an exclusively health intervention. It is our view that it is not. Social work plays a significant role in promoting and protecting the rights of people with or without a life limiting illness in ‘supportive care’. It also has a key role in both providing and commissioning services that can support people to remain in their home for as long as possible despite significant symptoms.

Question 2a. Do you agree with the strategy cornerstones, which form the basis for the strategy and delivery plans?

Agree 

We cannot disagree with the four cornerstones, but we do disagree with the assumption that this is a purely medical conversation. A whole systems approach would look beyond population health data and consider the distribution of medical AND non-medical services that can support people to live well.

Question 3a. Do you agree with strategy outcome 1 and the proposed actions being developed to deliver this outcome?

Agree in principle

Social work provides or commissions homelessness services, and other social care provision, and should be referenced specifically. The strategy should also set out the standards for supporting the vulnerably housed and homeless through which social workers can hold housing providers to account.

We agree that BASRiS should be used to speed up access to crucial benefits. However, it is our view that social workers have a very clear and important central role in connecting services, including access to benefits. We would like this to be role to be more clearly referenced in the strategy here.

We recognise the contribution that the third sector provides to this sector but the strategy currently does no recognise the central role that social workers have to access resources and to maintain human rights in palliative and end of life care.

While we welcome supports to IJBs to ‘explore options’ for their strategic plans, we would recommend using existing best practice as practical examples to support that planning. We believe that social workers working in the IJB are best placed to provide whole life examples.

Question 4a. Do you agree with strategy outcome 2 and the proposed actions being developed to deliver this outcome?

Unsure

The strategy currently reads and uses language as though all of the outcomes are to be delivered within a health model which risks minimising the crucial social supports that are necessary the live as well as one can. We would recommend that the strategy is reviewed and revised to reflect the role of social care and social work in palliative care.

We welcome the Palliative Care Innovation Network. This is an important innovation which should look beyond health needs to the social needs of people in end of life or palliative care.

Now that the NCS Bill has paused, how will the strategy address governance as described?

Question 5a. Do you agree with strategy outcome 3 and the proposed actions being developed to deliver this outcome?

Unsure

It is not clear from the strategy what outcomes will be seen as important to measure. The experience of our members is that positive social care outcomes are often created through positive social interactions and non-clinical responses to distress. Will these also be included in the outcomes that are measured?

The consultation uses the term ‘codesign’ but does not provide a definition. As the term is open to interpretation we would recommend that it is defined to help consultees determine the delimits of what can or cannot be influenced.

Question 6a. Do you agree with strategy outcome 4 and the proposed actions being developed to deliver this outcome?

Unsure

Our members would agree that measuring unmet need is a priority across social care. We believe that a key action is to engage with local authorities to ensure that need is recorded across the board, in addition to unmet need for palliative care. Providing tools may increase the competence in recording unmet need but only if the current funding and resource barriers to maintaining a record of need are overcome.

Our members are also concerned that restricting the data source to health records means that earlier indicators of social need that might also indicate a palliative care need in social care and social work records will be missed

We welcome the use of NHS 24 and 111 to access health care but it is unclear how the strategy will support those mechanisms to also access social care. We would need to see and hear more about the possible plans.

We welcome the promotion of better collaborative opportunities between health, social care and social work. However, we would need to see a concrete plan that sets out how that will be achieved.

We would like to see more detail about the social work and social care role in removing the barriers to specialist palliative care.

Whilst we welcome the commitment to access clinical support we are concerned that there does not appear to be any plans for the social supports that social care and social work provide that are crucial to good palliative care, and to dying well.

We recognise the importance of providing support to an essential service such as the SAS but we are disappointed that there does not appear to have been any consideration to widening that support to other services.

Question 7a. Do you agree with strategy outcome 5 and the proposed actions being developed to deliver this outcome?

Unsure

The exclusive focus on health services in the strategy is a cause for concern, particularly when at present a single integrated case record between health and social care appears to unachievable. The record described will be sufficient to meet health needs but will miss the social needs that a social work record would bring.

Question 8a. Do you agree with strategy outcome 6 and the proposed actions being developed to deliver this outcome?

Agree 

We are a little confused as to why only ambulance staff are mentioned as receiving core and professional development training in the strategy. Would this facility be extended to other professionals such as social workers?

Question 9a. Do you agree with strategy outcome 7 and the proposed actions being developed to deliver this outcome?

Unsure

The GIRFE toolkit provides tools to other professionals that social workers use in their everyday practice. It is not clear to us or our members at this point how the pilot toolkit will ease transitions which traditionally requires more social workers than are currently in the system.

We would also urge the team to ensure that the ethical review includes a social assessment of ethics in paediatric palliative care.

Question 10a. Do you agree with strategy outcome 8 and the proposed actions being developed to deliver this outcome?

Agree 

The strategy should have ambition beyond encouraging changes in practice. We recommend that the strategy should seek to direct rather than encourage change.

Question 12a. Community action and support - Do you think this strategy explains why it is important to encourage people, families and communities to come together, support each other, take action and talk more openly?

 Yes, but we are concerned that this emphasis suggests that community action is intended to take the place of professional support.

Question 13a. Earlier access to palliative care - Do you think this strategy explains why getting palliative care long before someone is dying can help adults, children, their families and carers?

Yes, but it does not provide a pathway to early help which could be signposted by social workers.

Question 14a. Improving access to palliative care and support - Do you think that the actions in this strategy can improve the experiences of people with different personal characteristics and circumstances?

Unsure. Whilst the characteristics are listed what the strategy does not demonstrate is how services will respond to them in a way that would be experienced as supportive.

Question 15a. Language and terms used in the strategy - Do you think the strategy explains what is meant by the terms palliative care for adults; palliative care for children; care around dying; and future care planning?

Palliative care as a term does not encompass the range of social support and social care interventions that are provided by social workers. We would urge the team to reconsider using the term and to use 'supportive care' as a much more accurate description of the breadth of care provided across health and social care.