Only one chance to get it right – integration and palliative care

• Written by: Richard Meade — Marie Curie — Head of Policy and Public Affairs - Scotland
• Published: 17th June 2018

There can be no doubt that integrating health and social care is the right thing.

It makes sense for just about every aspect of care and especially for palliative care, which supports someone who is terminally ill and approaching the end of life.

Palliative care aims to treat or manage pain and other physical symptoms, as well as social, psychological, emotional and spiritual needs.  It can support any terminal illness including heart failure, cancer, chronic obstructive pulmonary disease (COPD), dementia, frailty and others.  It can be introduced from the point of diagnosis, which means that people may receive care for years, months, weeks, days or even hours.

People who are living with a terminal illness are likely to need a range of services throughout their illness and these may be delivered in a variety of settings.  This can include the GP practice and district nursing services, social care, acute services, care homes, and specialist palliative care services such as hospices or community palliative care.  Scottish Government statistics show how terminally ill people can move between care settings.  Around 87% of a person’s last six months of life is spent at home or in a community setting meaning that they will spend on average 24 of those days in a hospital (this link will take you away from our website).  Navigating all of these services can be a huge challenge for patients, families and professionals alike.

Someone who is terminally ill should move seamlessly between services as they need them, with their wishes at the centre of their care plan.  Getting palliative care right can make a big difference for families; it can afford someone the chance to be cared for at home surrounded by loved ones, it can be the opportunity to visit family or attend a celebration, such as a wedding, it can be as simple as getting an evening gin and tonic at the hospice they are staying at or having someone walk the family dog.

The sad truth is that we estimate that about one in four people who need palliative care in Scotland do not get the care and support they need before they die.  This means they miss out on some or all of those services and the chance to continue to live the life they want until their death.

A significant amount of specialist palliative care services are delivered by the third sector in Scotland.  There are twelve independent adult hospices, as well as the two hospices provided by Marie Curie, and two children’s hospices.  Marie Curie also provides palliative care nursing services in communities across Scotland, last year supporting over 8,300 patients out of the 45,000 who died with a palliative care need. Scottish hospices supported 19,000 people of all ages last year.

Palliative care services must work in harmony with health and social care services if a person and their family is to receive the support they need and make the most of the time they have left.  The integration of health and social care, by bringing together local government, the NHS and the third sector, should make this more of a reality for more people.  The Scottish Government recognised the importance of palliative care services for health and social care and included a commitment to double palliative care services in the community in its Health and Social Care Delivery Plan (this link will take you away from our website).

Palliative care makes economic sense too.  There is a growing evidence base to show that those in receipt of palliative care are more likely to be cared for and die at home and much less likely to be admitted to hospital either through an emergency or an unplanned admission (this link will take you away from our website).  If integration authorities are looking to make efficiencies and ease the burden on acute settings then ensuring that palliative care services are a priority and well integrated could play an important part.

At the moment there is a very mixed picture across Scotland in terms of the progress we are making with integration.  It is by no means all bad, but there remain some significant challenges in many areas, especially for the third sector.

We have heard the term strategic commissioning used a lot in the ambition of integration, but some of the basics of this approach have yet to be realised.

This is particularly the case in developing true partnership working between the statutory sector and the third sector.  We need to see the third sector involved early, using its expertise, to understand the needs of local populations, and then developing plans together for meeting those needs through integrated services.  This isn’t happening in every integration authority.

We know that finance is a challenge, but the third sector needs sustainable funding in order to invest and innovate in services.  Unfortunately, we see that far too many third sector organisations are relying on twelve month funding contracts with limited evaluation, which bring considerable uncertainty.  The Scottish Government stated in its 2018 Programme for Government that it will look to ensure three year rolling contracts for the third sector.  This needs to be common place in integration authorities too.

There are already lots of examples of good practice across Scotland, but there is also a clear absence of shared learning between integration authorities which will undoubtedly lead to a variation in quality and, potentially, postcode lotteries.

There are lots of challenges, but none of them insurmountable.  We only get one chance to get it right for someone who is terminally ill and dying.  By working and planning together, drawing on our joint expertise and understanding, and delivering in partnership we have a much better chance of making sure that this is possible for everyone in Scotland.

Richard Meade can be found on Twitter at: @richardmeade13 (this link will take you away from our website).

Richard’s Opinion is part of the ALLIANCE’s ‘We Need To Talk About Integration’ anthology which is available at the link below.

End of page.