This blog post is by Kenny Steele, CEO of Highland Hospice. Highland Hospice have recently published Supporting end of life care in NHS Highland: Accounting for Value report.
Everyone seems to agree that our health and social care system in Scotland needs radical reform but I’ve yet to hear a credible solution being offered.
Sometimes you have to get to the end of a story before everything makes sense. However in ‘the cradle to grave’ philosophy of our health and social care system we are failing to fully understand how the story ends and therefore failing to understand how to fix the problem.
Now for a shock statistic: 100% of us die in Scotland. That’s actually one statistic that makes us no worse or better than any other country. Also more of us are going to be dying and needing care over the next 20 years as our population continues to age. Of course it’s not about whether or not we die but rather how we die that should be vexing us. It’s at the end of our life where we require the most support from a system we’ve been paying for all our lives. So is it providing us with value for money? Are our current systems sustainable as more of us require end of life care?
Most people in Scotland die in hospital. 1 in 3 hospital beds in Scotland are occupied by people in the last year of life and emergency admission to hospital in the last 3 months of life accounts for the biggest use of hospital beds. However, if you ask people where they would least like to die- yes you guessed it- hospital. Where do we spend the most money caring for people at end of life? – yes you guessed right again- hospital.
Of course, this is not just delivering a double whammy of poor value. Many operations and procedures that we depend on for our quality of life are cancelled simply due to a lack of hospital beds.
In a recent study in Highland it was identified that around 70% of the identified funding (£45m) spent on end of life care was utilised on hospital care. Now of course, many people will continue to need hospital care at the end of their lives but it is estimated that between 20-40% of these people could be cared for at home if resources were reallocated .
This tells a story of a health and social care system that has become increasingly medicalised and specialist and which has invested in hospitals at the expense of primary care (GPs and District nurses) and the community /voluntary sector.
Highland Hospice has been piloting a Palliative Care Response Service in Inverness. This aims to provide responsive access to care at home within 4 hours in an emergency for people in the last 3 months of life. Over a 6 month period, 57 people were supported to die at home, with their families, who would otherwise have required hospital care. It is estimated to have saved a total of 798 bed days and nearly £0.5m savings for the system and has received overwhelmingly positive feedback from patients and families receiving the care.
So why are initiatives like this not being funded? The answer is that the system does not ration access to high cost health care- just phone 999 and ask for an ambulance. Nobody is turned away from hospitals (thankfully!). However, the system does ration access to low cost care that could prevent the need for a hospital admission or at least could get them back home more quickly.
This does not need radical reform, it just needs wiser use of resources.
So why are we failing to spend public money wisely when it comes to end of life care and what are the lessons for reform of our health and social care system?
We need to stop thinking about the NHS as an organisation but rather as a social contract. Government needs to start spending money in a different way if it wants to deliver the outcomes that are important to people. That means spending money wisely and in ways that will offer the best health and social care outcomes for the population.
It means using our hospitals for what they are really good at- fixing people when we are broken. But when it comes to long term care and supporting people with terminal illness we should be looking to community organisations such as Hospices to deliver high quality, wholistic care that focusses on quality of life and delivers better value for the public.
Of course we are told that it is much more complex than this. But is it? It has been made complex by a massively bureaucratic uncompromising entity called the NHS which is currently in self preservation mode.
In Highland we have formed a partnership of over 20 organisations interested in improving outcomes for people at end of life. Of course NHS Highland is an important partner but it is being led and funded by the voluntary sector. Yes, it is complex trying to work with so many organisations but in doing so we are able to deliver higher quality, more joined up care which will deliver far better value for our population- but to make this sustainable we need the government to shift funding from the NHS to these types of collaborative partnerships.
Every story’s ending is important – never more so than when dealing with end of life care. So let’s start finishing the story and learning some lessons for our health and social care system.
When the UK voted to leave the EU in 2016, no one could have predicted the state the world would be in four years later, as we finally come to the end of Brexit negotiations. But COVID-19 has meant that the impacts of these changes, specifically to immigration, have become more prominent.
The UK’s points-based immigration system is set to come into force at the beginning of next year, but these new rules could be disastrous for Scotland’s social care sector.
Palliative care services make up a significant part of the work done by care workers in Scotland, and end of life care is only set to become increasingly important within the social care sector, with a report from last year estimating that social care provision in the community in Scotland needs to grow to support nearly 60% more people at the end-of-life by 2040.
Despite this, in a response to the Immigration Advisory Committee, the Scottish government has recently revealed that the new immigration system could create significant under-staffing issues to the country's social care sector, including palliative care roles.
According to the report, an estimated 16,000 workers from other European countries are employed in health and social care in Scotland, with an additional 10,000 people from other overseas nations. It’s clear then that the social care sector in Scotland is heavily reliant upon foreign workers. However, these same workers are set to be excluded under the new immigration rules.
As part of the UK points-based system, workers must be able to meet a certain salary threshold of at least £25,600 to be classed as “skilled workers” and be eligible for a UK work visa. Many of Scotland’s social care workers would fail to meet the proposed salary requirement, with data from the 2018 Annual Survey of Hours and Earnings (ASHE) suggesting that less than 10% of those working in caring and personal service occupations in Scotland earn £25,000.
When the COVID-19 pandemic hit the UK, foreign workers were at the frontline of the response, working tirelessly in the NHS to save lives. As stories of heroic foreign workers were publicised, it became clear that the government's new immigration rules excluded the very same people who have been sacrificing so much to fight Coronavirus across the country from being eligible for a UK visa. In response to this, the government announced a new Health and Care Visa, intending to make it easier and cheaper for foreign workers to come to the UK to work in the NHS or for an organisation that supports the NHS.
However, the Health and Care Visa fails to include social care workers, even though they too have played a significant role during the pandemic. Scottish ministers are now calling for the government to add social care roles to the Shortage Occupation List (SOL) to prevent the sector from suffering.
Ben Macpherson, Minister for Public Finance and Migration, said: “Care professionals from all over the world have played a vital role in caring for our communities during the COVID-19 crisis. It is mind-boggling that the UK Government has introduced a ‘Health and Care visa’, intended to show the UK’s gratitude to frontline workers in these sectors, but that this initiative bizarrely continues to exclude and disregard the huge contribution of social care workers.”
Adding social care roles to the SOL would allow employers to recruit international workers at a lower salary threshold of £20,480 instead. Not including social care roles would have a significant impact because Scotland’s social care sector is already at risk, with staffing issues in many roles. A Scottish Care employer survey from 2018 indicated that 77% of care homes were having recruitment difficulties. The Coronavirus pandemic has only increased this risk, putting more pressure on health and care services. Over the next four years, it is anticipated that demand for health and social care staff will increase with estimates suggesting it could rise by as much as 10,500 more full-time social care staff being required.
And it’s not just the social care sector that is set to face damaging impacts, the Scottish government has expressed its opposition to ending Freedom of Movement, claiming it will significantly damage Scotland’s economy and heighten its demographic issues. A report from February last year, looking at the impact of the UK Government’s Immigration White Paper proposals in Scotland, estimated that migration to Scotland over the next two decades would fall by between 30% and 50%, causing the working-age population to decline by up to 5%.
There is a significant amount of evidence to suggest that the new immigration rules do not recognise the individual needs of Scotland when it comes to immigration. The new requirements put a monetary value on foreign social care workers in Scotland, but the reality is that these workers are invaluable. The impact they have on Scottish communities and lives, particularly during this difficult time, goes above any economic value they may provide to the country. If the government truly wishes to recognise foreign key workers for their efforts during the pandemic, then social care workers must be included in this.
Reanna Smith is a political correspondent for the Immigration Advice Service, a team of professional immigration lawyers dedicated to helping foreign nationals wishing to come to the UK.
Whilst there remained a possibility that Brexit might not happen SPPC articulated its considered view that “in all likelihood Brexit will significantly damage the care which people receive towards the end of life”. SPPC highlighted key concerns about how Brexit would likely negatively impact workforce, scientific research, medicines supply and funding. These concerns remain.
What may feel like the exhausted end game of Brexit is really the beginning of the most important stuff. Evidence suggests that all Brexits are likely to be harmful to palliative and end of life care, but some Brexits will be much worse than others. The Big Ben Bong phase of Brexit will be completed in a couple of days with both genuine joy and genuine sadness/anger expressed copiously. Thereafter Getting Brexit Done will be a matter of choosing where the UK will sit on a continuum of harm which runs from bad to really very bad. The UK Government will then attempt to negotiate the dull and massively complex multitudinous details necessary, within the ludicrously short timescale that it has chosen to inflict on itself.
There is an opportunity for the palliative care sector to influence the shape of this post-Brexit world. Over the past fortnight the Westminster Government has sent conflicting signals on the extent of regulatory alignment they are seeking between the UK and the EU. They have rowed back a bit on previously envisaged salary thresholds for immigration. The Prime Minister continues to wish away ( others might say “lie about” ) the customs and regulatory checks in the Irish sea which are a legal consequence of his own Withdrawal Agreement, which is now law. It is probably a mistake to attach too much significance to specific individual pronouncements. However, this is a government now trying to manage a situation where four years of essentially sentimental rhetoric about “sunlit uplands” and “Buccaneering Britain” is in slow motion collision with reality. They clearly haven’t got it sorted, stuff is in flux and the tough choices and trade-offs inherent in the Brexit project can’t be ducked for much longer.
Many organisations and individuals chose for good reasons to keep out of a Brexit debate which was divisive, polarizing and sometimes outright toxic. Those articulating concerns about negative impacts of Brexit were often accused, often fairly, of trying to stop Brexit. Now however Brexit is happening. The debate need no longer be framed as “Brexit yea or nay”. We need a trade policy, we need an immigration policy and we need a policy on scientific collaboration. The shape of each of these policies will have profound impacts on palliative and end of life care. The responsibility to inform and attempt to influence – that’s on all of us, whether we supported Brexit or not. The responsibility to decide and to account for the outcomes – that’s on the Westminster Government.
By Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care.
This blog is by Elaine Colville, Senior Nurse for Palliative Care at Angus Health & Social Care Partnership.
There is a lot of good work taking place in Angus by people who provide palliative and end of life care and support across a range of settings.
As part of our work to develop our Strategic Commissioning Plan (2019-2022) we recognised the need to have more in-depth discussions on how to improve people’s experiences of palliative and end of life care and support and produce a plan to take forward improvements.
A local charity, Lippen Care, provided funding to support this work. In August 2018 a steering group was established with wide representation of staff, services and organisations that provide palliative and end of life care and support across Angus.
There was wide engagement with members of the public, carers and our workforce. This was a crucial step on developing the plan to ensure that individual experiences were at the heart of our work. We asked people what they thought good palliative and end of life care looked like and what we could do differently. A number of key themes emerged:
1. Compassionate & person centred care
2. Compassionate communication & conversations
3. Care closer to home
4. Getting it right for the family
5. Education & development for the workforce
6. Public health approaches to palliative and end of life care.
These themes were mapped and aligned to the results of a rapid review of national and international strategies for adult palliative and end of life care. The steering group developed outcomes for each of the six themes that would ensure people and their families receive the care experience that they expect and that staff are supported to care.
We mapped these outcomes to the Strategic Framework for Action (2015) and Scottish Government (2018 ) Strategic Guidance for Commissioning of Palliative and End of Life Care 2016-2021. We asked key stakeholders for feedback on the draft themes and outcomes. The feedback was evaluated and the outcomes were reviewed again. By June 2019 the final draft plan and outcomes were presented to our Strategic Planning Group and they gave it their approval and support. The Adult Palliative and End of Life Care Plan for Angus Health and Social Care Partnership can be accessed at www.ahscp.scot
Publishing the plan is not the end of our work. The next steps are to develop a purposeful Action Plan to transform words into reality to ensure every adult who wishes it receives high quality palliative and end of life care at the right time and in the right place. For more information contact hsciangus.tayside@nhs.net
A poster about this work is available here: Developing an Adult Palliative and End of Life Care Plan for Angus HSCP
I’m an S4 student at Portobello High School. This year everyone in my year group got the opportunity to experience a working environment for one week. You could choose from a list of suggested placements or find one yourself.
I decided to come to the SPPC as I’m very interested in working with people and helping those around us – this is the sort of work I would like to do when I’m older. My aunty Caroline who runs The Truacanta Project has spoken about her work and I’ve always thought it sounded great. I like the fact that it is breaking the stigma around talking about death, dying and bereavement. As I feel that in our society it is a topic which is so often avoided.
I knew a little bit about the work beforehand, but my knowledge and understanding has grown immensely. I learnt a lot about the Truacanta Project and the different events that are on throughout the year, for example, To Absent Friends and End of Life Aid Skills for Everyone. I know lots about Death Cafes and think they sound like a brilliant idea. I have been working on a proposal for a teenage death café which has been fun.
I’ve learned so much from my time with the SPPC. Being in an office environment is very different from school. Everyone was working on different tasks including me which gave me a sense of independence. I have been asked to do things I normally wouldn’t do such as write a blog post, create flyers and leaflets, write a proposal, and manage their social media. I attended a meeting with one of the shortlisted Truacanta communities where I learnt about their goals and hopes for their community. It was interesting to hear how they hoped to improve the conversation around death, dying and bereavement and how they wish to bring awareness and support into the local community.
I will take lots away from my time at SPPC. I gained an insight into how a charity works and saw how a good idea can turn into a reality. You don’t need to be a powerful person to make a change - if you have an idea you can make it happen with hard work and determination. I saw ordinary people wanting to make an impact on society and people’s perception on death, dying and bereavement.
Overall, I think work experience is a great opportunity for high school pupils as it gives us an insight into working life and the adult world and gives the chance to learn new skills and do tasks we might not normally do.
Lastly, I would like to thank SPPC for being so welcoming to me as it can be quite intimidating going somewhere new.
By Poppy Gibb-Kenny