Health inequalities shaping hospice care

Reflecting on the role of Hospice of the Valleys in delivering palliative care into an area with multiple health inequalities has been an interesting exercise.

As you would expect, and would indeed hope, the nature of the services are shaped by the people we serve. The demographics of this population potentially make us an outlier to the data around populations who access hospice care across the UK. 

Our hospice has good reach into our community, supporting over 3% of people locally, and is involved in supporting over 50% of deaths each year. But growing demand and poor general health means many challenges. 

This is a close-knit community with generations living in the same household or very close by. This can provide a strong support network within families who prefer to care for loved ones themselves, which in turn has direct impact on the person’s ability to stay at home to die. While this is patient-led choice this can lead to crowded and chaotic household when communicating about treatment plans or delivering services.

Our workforce reflects this community. Clinical and social care staff have grown up and have been trained in the local area, this has meant that staff retention has not been a big issue and recruitment has been easier than for other hospices. 

Having staff from the community they serve has a positive impact on building trust when supporting residents. However, there has also been less innovation and development of services as the core are embedded in the local ways of doing things. Changes have been staccato and their value mistrusted initially.

Connections within the local system supports patients 

It is essential for us to be embedded in the local social and healthcare system. Even though 98% of community patients who need specialist palliative care are supported by independent hospices in Gwent, hospices need to be very proactive in getting seats around the relevant tables.

The reasons for being proactive are threefold:

1. To ensure that pathways remain clear for all referrers (including self-referrers). 
2. To have the opportunity to influence decision making and service delivery
3. To maintain an oversight on opportunities for partnerships, developments, and extra funding. 

Currently we have seats on the Neighbourhood Community Network meetings (GP Clusters), sit on the health boards’ End-of-Life Care Board, the Dementia Board and attend GP based palliative care MDT’s as well as those in out of area acute hospitals. This consistent presence maintains the profile of palliative care with local and regional plans. It is not an option to ease off on this. 

Recently the Intermediate Term Plan locally adopted a national cancer pathway, a pathway that stopped at curative treatment and supporting survivorship, ignoring a terminal diagnosis and palliative and end of life care, our presence at these meetings allowed us to highlight and rectify this.

We also provide a nurse-led service within the local community hospital which links with wider hospice services. Hospice clinical staff have honorary NHS contracts that allow them to both recommend hospital admission and to follow patients onto the ward. This helps patients struggling with symptom control or for those who have chosen the hospital as their preferred place of death.

Working with colleagues in the hospital has also enabled the identification of existing in-patients with specialist palliative care needs who can then be supported by hospice services.

Expansion of connections

These connections have expanded in recent years, transformed by our dementia service being social worker-led rather than nurse-led. Support for families living with a dementia diagnosis is often where health and social care butt heads most frequently. The language is different, as is the relationship between professionals. Avenues to having a voice in this arena were more problematic prior to having a social worker in a senior role.

As much as I am keen for Hospice of the Valleys to have a high profile though our connections, the reasons behind the pursuit of connections and influence remains patient-focused. Staff need to have a strong advocate aspect to their roles if positive outcomes for patients are to be achieved. 

A dilemma

A dilemma linked to this advocate role is that we need to be easily accessible. We are known locally to pick up the phone and respond directly, this is a great reputation to have, however, we do not have the resources to be the first point of call to fulfil a co-ordinator role for the wider sector.

There is therefore a tricky balancing act in supporting families (and healthcare professionals), but also encouraging them to try traditional routes before contacting our team.

The impacts of social and economic challenges on patients' decisions 

Lower literacy rates locally mean that the level of understanding of diagnosis and prognosis by those referred into the service can be quite low. The inability to understand treatment plans and medication regimens is common. One home visit can lead to a significant time on calls trying to seek clarity for patients, journeys to pick up prescriptions and co-ordinating information between healthcare professionals. 

Cost implications will often lead to poorer patient outcomes. Our Family Support and Welfare Rights teams are vital in addressing financial concerns at the point of referral. Poverty means that people will work longer into their illness before accessing support and often are keen to access support on benefits before discussing treatment plans.

Limited income also means that families are unable/less willing to purchase equipment or supplies needed for ill health (commode/incontinence products/disability equipment/chairs) and prefer to wait until these are available for free. 

We are side by side with patients and families navigating through a complex system. We do this, because we can. We see direct benefits for those on our caseload, but we also feel like enablers, allowing a broken system to perpetuate. Systemic change could alter the power dynamic and turn the talk of Patient Centred Decisions into a reality, but engaging with a process that makes meaningful change seems unlikely currently.

After working for national charities, Grant Usmar joined the hospice sector in 2009. Hospice of the Valleys is the third hospice where Grant has worked and he has been CEO there for the past 6 years.

Grant is also a member of the Hospice UK Advisory Council representing the hospices in Wales. He chairs the Palliative Care Outcomes group for Aneurin Bevan University Health Board and is Vice-Chair of Hospices Cymru.

He is a long-standing trustee for the learning disability and mental health charity EncompassCare in Dorset and is a mentor for ACEVO members.