- Assisted Dying Bill
- Assisted Dying Bill Published
- Winners of the Derek Doyle Poster Prize
- Palliative Care Poster Parade
- SPPC Submission to Scottish COVID-19 Inquiry
SPPC Blog
The UK’s new immigration rules threatens Scotland’s social care sector and disregards it’s workers
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.
Developing an Adult Palliative and End of Life Care Plan for Angus Health & Social Care Partnership
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
Reflections from Dr Derek Doyle
As I sat at the bedside of my much-loved wife dying in St Columba's Hospice a few months ago my mind inevitably went back 40 or more years to things that were said to me in those 'early days'. The people who uttered them would never have thought of them as so important as to be repeated years and years later but history has shown they are. Let me share them with you now but not in any special order.
I am indebted to many of the pioneers of Palliative Care here in Edinburgh, many UK cities, most European countries, North America, Hong Kong, Japan, New Zealand and Australia.
Read, then stop and think!
"Palliative care is just good, compassionate care - very much needed but not a new discovery."
"Hospice /palliative care is no more / no less that just good compassionate caring."
"Doctors are getting better at keeping people alive but they seem to forget that all life must have quality rather than quantity."
"From their student days doctors have been trained to see death as a mark of failure. Who wants to work with failure?"
"Doctors seem to have been taught more about opioid dangers than their genuine benefits."
"Good doctors have been giving excellent palliative care for years but did not give it a fancy name."
"Contrary to what so many hospital doctors think, GPs are not idiots. They should try it for a month!"
"How do you prevent this palliative care ward becoming like all the general wards in this hospital?"
"There would be fewer calls for euthanasia if all doctors were up-to-date on pain management which is getting better year on year."
"Are GPs really so busy, even in an occasional evening, that they cannot visit a patient in the local hospice?"
"Listen to the nurses - they often know more about a patient than doctors think."
"Don't snigger at a patient wanting someone to help them pray or read a passage from the Bible for them - most people look for spiritual (though not necessarily denominational) meaning as death approaches."
"Your new specialty - Palliative Medicine - will only survive and justify its existence if it gives high priority to research."
"Remember to reassure patients and relatives that research is not experiments on them."
"Remember that many ( possibly most) dying people secretly wonder if they are dying because of something they have done or failed to do."
"Take every possible opportunity to teach students - medical, nursing, divinity....... Time spent on tutorials is NEVER wasted."
"Remember that Mr and Mrs Public think medical research is experimenting on animals and dying humans. The very word can upset some people."
"Remember that many relatives of a dying person wonder if they are candidates for the same condition."
"Old-fashioned as it may sound, most patients like doctors to shake their hand on ward rounds or to hold a hand of a doctor or nurse speaking to them."
"No matter how busy a palliative medicine doctor is, 10-20 minutes with the closest relatives of a new patient is NEVER wasted time."
"Always explain why a test is being done and how it might help (good practice anyway)."
"Ask first, and if a patient wants to know why medication is being changed, explain."
"Remember that most people are unsure what 'lesions', 'tumours', 'malignancies', 'cancers', and 'sarcomas' are!"
"Try to explain as much as possible to terminally ill people but do not bewilder them more than ever - they are often very muddled anyway."
"Do hospice doctors really know what life is like in a frantically busy, under-staffed, under-funded ward in a general hospital?"
"I expected to see the nursing staff fraught, nervous or red-eyed from crying. What's the secret?"
"Two years ago I came on this committee looking at your application for specialist status of Palliative Medicine. I was opposed to it and ready to walk out. Now I see it as one of the greatest developments in Medical Care in a generation."
This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.
Palliative and End of Life Care Standards in Scotland’s Prisons
The Scottish Governments Strategic Framework for Action on Palliative and End of Life Care shares a vision that by 2021 everyone who can benefit from palliative care in Scotland will receive it – ‘no matter what their circumstances’.
There is a reality in Scotland’s prisons; prisoners are getting older and facing end of life in prison. It would be fair to say this is not just an issue in Scotland but actually reflects the growing international issue of ageing prisoners. In May 2017 the European Association of Palliative Care commissioned a task force with the aim of mapping Palliative Care provision for prisoners in Europe. Prison systems vary hugely across countries and attitudes to and provision for dying prisoners are variable.
I have been employed in a two year role with the task of implementing palliative and end of life care standards in Scottish Prisons. This role is funded by Macmillan with the primary goal of supporting the NHS staff and Scottish Prison Service staff working in prisons continuing the work of implementing these standards of care.
A 2017 report by Audit Scotland highlighted that there was a higher death rate among the poor in Scotland with mortality rates from cancer and heart disease higher than the rest of the UK. The incidences of cancer are increasing across Scotland, which means there is likely to be a growing number of prisoners with a cancer diagnosis. Prisoners experience a disproportionately higher burden of illness (including infectious diseases, long term conditions and mental health problems) and problems with substance misuse (drugs, alcohol and tobacco). The prison health demographics sees the health age of most prisoners as being at least a decade older than the general public with a shorter life expectancy with the fastest growing population in Scotland’s prisons being males over 50.
A recent report Who Cares? The Lived Experience of Older Prisoners in Scotland's Prisons by HM Inspectorate of Prisons Scotland highlighted the case of ageing prisoners. It discussed the challenges for the staff working in prisons in caring for this group and for the prisoners themselves with their biggest fear, dying in prison. The group surveyed were predominantly serving 4 years or more which is considered a long term sentence.
Prisons have historically been built for young men but the changing face of prisons mean that the environment is often unsuitable for older prisoners. It is a sobering experience when you enter one of the halls in a prison and see wheelchairs, zimmer frames and walking sticks and where the general population would not look out of place in a Nursing home.
The Healthcare for each prison is the responsibility of the Health Board where the prison is situated. The core Health team is made up of Primary Care nurses, Mental Health nurses and Addiction team. They are supported by a GP and varying other visiting professionals from their Health Board.
There is no provision of in-house hospital facilities in Scotland’s prisons and no 24 hour nursing care. There is an out of hour’s system to contact a GP if required. Social care is provided by agencies organised by the Scottish Prison Service.
What was evident in discussions at varying prisons was the challenge in identifying their population who required supportive and palliative care. It was clear that for staff, just like many others; there were myths and misconceptions around the subject of palliative care with most voicing it was about end of life.
An example of work done in one of the prisons which have a larger cohort of older prisoners is in establishing a multidisciplinary Supportive and Palliative Care meeting which allowed for discussion and early identification of these prisoners. I have introduced the SPICT4-ALL tool and there is ongoing discussion how we can apply this.
I recently supported ‘To Absent Friends’ events in HMP Kilmarnock and HMP Glenochil and was humbled by the honesty of the prisoners and the staff in discussing their experiences of loss. The events were well received and there has been further discussion as to how this could be developed.
In the few months since I commenced in this post I have met some extraordinary staff from both the Prison service and NHS, who works tirelessly to ensure that prisoners receive the best standard of care possible within their context. There is an opportunity for those of us who have the knowledge and experience working in Palliative Care to further influence this work and continue to support the staff and those who are in prison.
Gail Allan is Macmillan Palliative Care Coordinator for Prisons. If you would like to know more or share your work in Prisons then please get in touch by email.Living and dying with the 'unknown unknowns'
“there are known knowns. these are things we know that we know. there are known unknowns. that is to say, there are things that we know we don't know. but there are also unknown unknowns. there are things we don't know we don't know.”
- Donald Rumsfeld
Life with a condition like Parkinson’s is characterised by uncertainty.
Getting a diagnosis (the known known) typically takes some time, and even then doctors can’t reliably predict what the future will hold for any individual (a scary combination of known unknowns and unknown unknowns). And as the confusing Rumsfeld quote demonstrates, people find themselves in a bewildering and uncertain world where nothing can be taken for granted.
More than 60 Parkinson’s symptoms are possible - but they are not inevitable, and they affect each person in a unique combination of ways. Rates of progression vary considerably. With the right treatment and support, some people live with the condition relatively well for some years. Others face significant impairments within the first five years.
Many people develop dementia, communication and mental health symptoms that can affect their ability to make their wishes known as their condition progresses.
Around 900 people in Scotland die each year with Parkinson’s recorded on their death certificates, but there is evidence that this is significantly under-recorded. The most recent UK Parkinson’s Audit in 2015 showed that only 28% of people with advanced Parkinson's had any recorded discussion of end of life care issues. Very few people with Parkinson’s access specialist palliative care, despite evidence that people at the end of life report quality of life as bad - or worse than - people with advanced cancer and motor neurone disease.
More than 11,000 people in Scotland are trying to balance hoping for the best while preparing for the worst. But facing the inevitability of declining health can be really tough.
Take Janice, diagnosed eight years ago. She says she is “pretending to be ok”.
“I live for the day, and I don’t think about the future a lot. It flits through my mind and then out again. I’ve tried to make life so normal for my two children. I don’t want my kids to have a sick mum, I want them to live their young lives and not be worried.”
Janice was still working as a palliative care nurse when she was diagnosed – and by coincidence, her first client after her diagnosis was a man dying with advanced Parkinson’s. She found the experience unexpectedly reassuring, “He was an older man – much older than me, and his death really wasn’t that different from those I’d seen with end-stage cancer. I realise that dying didn’t frighten me. I thought I feel OK, I can cope.”
That’s not to say that she is without fear. But what Janice fears is dependency, not death. “I can’t stand the thought of being dependent. I’m the person who does. I value my independence and my ability to help other people.”
And the fear of future impairments is common. One man, diagnosed with Parkinson’s in his mid-thirties, gets his wife to vet Parkinson’s publications for him, so that he does not have to read anything depressing. Some people – including those with advanced illness - prefer to avoid meeting others with Parkinson’s in case they represent their potential future. Gerry has lived with Parkinson’s for twenty years, and says he and his wife use humour to deflect their fears, with jokes about care homes to the fore.
One man told me about his late wife. She lived well with her Parkinson’s for eighteen years, before it advanced to a point that made her last four years very difficult.
By all accounts, she received excellent care and support. But the transition to being cared for was an impossible one for her, and she hated the experience. She liked her carers, but found losing her independence degrading. She said that using a hoist made her feel “’like a piece of meat”.
Her widower says that with 2020 hindsight, he wishes that the family had got more support earlier, like a wet room, a stair lift and a wheelchair accessible car. But he admits that his wife was resistant to adopting what she saw as the markers of increasing dependency.
It can be challenging for health professionals, families and friends to support people affected by Parkinson’s to think about and plan for the future. We’re up against a culture that fears disability, frailty, old age and death, and a condition that is characterised by uncertainty. It would perhaps be less intimidating if advance planning were seen as something for everyone to consider, not just those who are facing a future of increasing ill health.
But the issues people with Parkinson’s face are pressing. Creating a culture that supports people to think about the future can - and must – be done.
Parkinson’s UK has developed a range of accredited information materials about advanced Parkinson’s to support individuals and families to prepare for declining health and the end of life. Our free local adviser service and helpline offer confidential one-to-one support to people affected.
The health professional-led UK Parkinson’s Excellence Network is looking at ways to increase the uptake of anticipatory care planning for people with Parkinson’s, and spread this across services in Scotland and the rest of the UK.
The reasons why we must deliver a change in culture ultimately lie with people living with Parkinson’s. The good news is that Janice is already thinking about her future, with a will pending once complex pension issues are resolved. Gerry has already planned his funeral, and is considering how power of attorney could deliver greater peace of mind for him and his wife. And as one carer, whose wife has had Parkinson’s for more than 20 years said to me:
“This is a subject which nobody likes to talk about, but I think it has to be brought out into the open, so that all families affected by Parkinson’s are able to make the right decisions if they need to. My wife and I are glad we’ve had the opportunity to discuss these issues, because we now have a clearer understanding of each other’s thoughts and feelings. We think it’s really helpful to have a prompt for such conversations while the person with Parkinson’s is relatively well. It’s certainly been positive for us.”
Tanith Muller is the Parliamentary and Campaigns Manager for Parkinson’s UK in Scotland.
If you are affected by any of these issues, please visit parkinsons.org.uk to access resources and free confidential support. access resources and free confidential support.
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