Make Caring Visible, Valued and Supported. #CarersWeek2022

Research released for UK’s Carers Week 2022 (6-12 June) has found that 84% of the general public think that the UK governments should provide additional support to unpaid carers including increased financial support and investment in care and support services so that unpaid carers can have a break. Only 3% disagreed. (I’d quite like to know who they were and what they were thinking?)

The report, which you can access here also shows that the number of unpaid carers remains higher than before the pandemic with 1 in 5 of all UK’s adults (approximately 10.58 million people) now supporting a relative, close friend or neighbour because of chronic illness, including mental ill-health, dementia, disability, or difficulties posed by aging  

The intensity of care they are providing has grown since earlier in the COVID-19 pandemic, with several factors possibly having an impact. These include, many health and social care services still operating in a reduced manner or closed and therefore no longer available. Many vulnerable people continuing to shield from the threat of COVID-19 and the vagaries of Long COVID and the pressures on primary health care and the UK’s ongoing chronic shortage of social care provision. The numbers of people providing over 50 hours per week as a consequence has risen by 30%!

At the same time, carers with lower household incomes were much more likely to be providing significant amounts of care (i.e., over 20 hours per week) with 2.2 million carers worried about their ability to cope financially.

The value of their care is staggering and has been estimated at £530 million per day during the pandemic, or the equivalent of £193 billion a year. There is no doubt that without them the whole health and social care service in Britain would collapse.

A big thank you this carers week and always to all informal carers out there. Currently I am not of you after many years of being a carer. For all of you I am posting this link to the Age-UK Help and Support for Carers Page so that you can try and source all the help that you need. For everyone else lets get behind the key recommendations of this report.

• Given the negative impact of the pandemic on carers and the people they care for, the governments in Wales, Scotland, Northern Ireland and the UK should bring forward a 12-month Recovery and Respite Plan to support carers, with
• Protect carers physical health with specific and targeted investment, including
• £1.5 billion for carers’ breaks in England with similar investment in Wales, Scotland and Northern Ireland.
• Improve and sustain carers mental health with specific and targeted investment in carer-focused wellbeing support.
• Planning before winter to ensure that targeted packages of support are in place for carers including practical support and in any infection control measures required make carers a priority.
• Put in place active measures to support their ability to juggle work and care, including making a right to Carer’s Leave a legislative priority.
• Protect carers from the cost of living crisis, helping them with energy costs and the ability to pay bills by introducing or increasing carer payments, including to those on the lowest incomes to ensure hat they are able to manage financially.
• Introduce Measures to increase the identification of carers and public awareness of the issues faced
• Embed transparent, measurable and long-lasting commitments to better value and invest in care, and carers, within relevant performance frameworks to drive transformative policy and spending action.

Its a big list but remember at some point in your life you are either going to be a carer or you are going be dependent on informal carers (usually your family friends). After all every year in the UK around 2.3 million people start
caring for the first time and are potentially new to a caring role.

  

Covid-19 and Health and Social Care Workers

The Westminster government in England and as a consequence the other jurisdictions of the UK are now pursuing policies that require the population to effectively get used to living with COVID-19. The Secretary of State for Health and Social Care Sajid Javid is on the record as saying that the UK is leading the way in learning to live with the virus “…thus enabling the country to begin to manage the virus like other respiratory infections.” So is Coronavirus like other respiratory Infections? Well, we know it is not, just by looking at the impact that the virus has had on health and social care workers.

The WHO in September 2021 estimated that between 80 000 to 180 000 health and care workers could have died from COVID-19 in the period between January 2020 to May 2021, converging to a medium scenario of 115 500 deaths. This estimate is derived from the 3.45 million COVID-19 related deaths reported to WHO as of May 2021; a number considered to be much lower than the real death toll (which could be 60% or more than this estimate). See the John Hopkins Coronavirus Resource Center figures.

In March 2021, Steve Cockburn, Head of Economic and Social Justice at Amnesty International stated that “For one health worker to die from COVID-19 every 30 minutes is both a tragedy and an injustice. Health workers all over the world have put their lives on the line to try and keep people safe from COVID-19, yet far too many have been left unprotected and paid the ultimate price,”

Unsafe working conditions and a lack of personal protective equipment (PPE) have caused huge problems for health workers worldwide throughout the pandemic, especially in the early phases. Some groups were particularly neglected cleaners, auxiliary staff and social care workers even faced reprisals including dismissal and arrest after demanding PPE and safe working conditions in some countries. In a significant number of countries, the neglect of care workers has been a consistent feature of the pandemic. At least 1,576 nursing home staff have so far died from COVID-19 in the USA. In the UK, 494 social care workers died in 2020, and UK government data shows that those working in nursing homes and community care were more than three times as likely to have died from COVID-19 as the general working population. 

Death though is only one outcome. What about Long Covid? There have been many reports from healthcare professionals experiencing mild symptoms during their initial infection with COVID-19 and thereafter a prolonged course of symptoms of fatigue, dyspnoea, joint pain, and chest pain, many of which are characteristic of autoimmune mediated responses. How many healthcare workers are we talking about though who may have Long Covid?

In September 2021 the ONS estimated that the percentage of healthcare workers living in private households with self-reported long COVID of any duration by sex and age group in the UK, for the 4 week period ending 5 September 2021 was as follows

Amongst men it was 2.28% in women it was 3.36% rising to a worrying 4.01% in women over 50.

Their estimates relate to self-reported Long Covid, as experienced by study participants in the ONS Coronavirus infection Survey. Although they were not clinically diagnosed as having Long Covid they were asked to respond to the following questions: “Would you describe yourself as having ‘long COVID’, that is, you are still experiencing symptoms more than 4 weeks after you first had COVID-19, that are not explained by something else?” and, if so: “Does this reduce your ability to carry-out day-to-day activities compared with the time before you had COVID-19?” and “Have you had any of the following symptoms as part of your experience of long COVID? Please include any pre-existing symptoms which long COVID has made worse.” So it is fairly certain that they were experiencing Long Covid at the time.

Again you have to consider this an underestimate, as health professionals have been overwhelmed with the surge in workload posed by the rise in cases and growing demand on the health systems that have limited capacity. Symptoms of chronic fatigue, joint pains and dyspnoea could easily be attributed to the additional workload, or accompanying work related stress. Healthcare workers are likely to be silently suffering while experiencing Long Covid, even while continuing to save lives during this ongoing pandemic. So let’s just say that we are losing around 4% of the health and social care workforce worldwide for some considerable periods, as a consequence of Long Covid. One product of this is that if we are to protect the health and social care workforce, research into the role of repeated exposure in a healthcare delivery setting and/or in the community to COVID-19 needs urgent evaluation. While we know vaccinations are saving lives, we have very little knowledge of the protection they offer to Long Covid should you get infected or re-infected as is occurring now.

There are also the other consequences that are concerning all healthcare organisations currently, as an increasing proportion of the workforce are suffering from burnout, stress, anxiety and fatigue.

So back to my original question. Should we be managing this virus like other respiratory infections. Well clearly not… because if we do the outcome will be more health and social care staff dying and developing Long Covid etc. and they are in short supply worldwide as it is. In October 2021 the WHO and its partners began calling on all Member State governments and stakeholders to strengthen the monitoring and reporting of COVID-19 infections, ill-health and deaths among health and care workers. They should also include disaggregation by age, gender and occupation as a standard procedure, to enable decision makers and scientists to identify and implement mitigation measures that will further reduce the risk of infections and ill-health. As a society we have a moral obligation to protect all of our health and care workers, ensure their rights and provide them with decent work in a safe and enabling practice environment and that includes not exposing them to further risk because of our and our respective governments’ complacency.

Introducing #socialcarefuture

This week I am introducing you to #socialcarefuture This is a growing movement of people with a shared commitment to bringing about major positive change in what is currently called “social care.” #socialcarefuture is a broad movement in the UK working towards a new vision where we can each be supported to make choices about where and with whom we live, on equal basis with others, to pursue our life goals and to be and feel connected to our wider community.

The group has started with the premise that examples of doing things better are already with us. Innovators have been developing better approaches to social care in spheres including management and ownership and the use of professional skills. Groups of people using social care and community organisations have led the development of mechanisms that can transfer power to those requiring care and organisations that can support individual and group advocacy. This movement aims to move these approaches from the margins to the mainstream.

Over the past year, with their partners Equally Ours, research company Survation they have been exploring how to shift how people think and feel about social care. In April 2021 #socialcarefuture published their report Building Public Support to Transform Social Care which you will find HERE.

Well worth looking if you are involved in changing how others think about and value social care.

They have a very interesting Blogging page. I’ll pick out a recent one (20th of April 2021) where you can access their guidance regarding communicating about social care. To view this CLICK HERE.

There you will find the link to another of their Blogposts  5 tips for changing the way people think about social care

NOW is the time to support their stance. Follow them on Twitter, Facebook and via WordPress.

Apps You Might Want to Try Out

One good thing about the current COVID restrictions is that it has led to a bit of a mini explosion in providing Apps that make getting useful online resources to your ‘phone and tablet easier. September saw a number of these being launched that you might want to look at.

So to start with Alzheimer Scotland now have their own Alzheimer Scotland App See https://www.alzscot.org/alzscotapp

This App contains Handy information, contact numbers, support and services, with an alert function to keep you up to date on changes in your local area. 

Purple Alert, the community app which helps to find people living with dementia if they are missing has undergone an upgrade. This is a major rebuild of the old app following it’s milestone of reaching 10,000 users. The new version adds functionality that tailors it to your local area.  You can either download it to set up a profile for someone you care about in case they go missing, or to be a member of the community who helps to look out for someone when an alert is raised.  If you have the old version of Purple Alert, you should visit the app store and download the new app, listed as Purple Alert Scotland.

See https://www.alzscot.org/purplealert

ADAM (About Digital and Me); https://meetadam.co.uk/ is not an App but a platform connecting people with dementia with the right technology at the right time, based on their aspirations.  The products which are suggested in the catalogue have all been tested by families living with dementia and Alzheimer Scotland’s Digital Leadership Team, to ensure their relevance. Please spread the word about these products, and particularly encourage people across Scotland to download Purple Alert and become part of the community.

Another I came across is from the UN. Released by ActNow, the United Nations campaign for individual action on climate change and sustainability. The campaign and the App encourages every one of us to do our part to help limit global warming and build a better future in line with the UN’s 17 Sustainable Development Goals — the world’s blueprint for a more peaceful, more equitable and greener world. The App is called AWorld (because there is no Planet B) and can be downloaded at https://site.aworld.org/

What will #Scotland #Socialcare Look Like in the Future?

Last weekend the first part of a Scottish Social Care Special Report on the future of social care Post Covid-19 by Pennie Taylor, the former BBC’s Health Correspondent. It went out on Sunday’s @BBCWeekendGMS between 9.30 to 10am. In the report insiders shared their experience of working in what has become a a very pressurised system.

The report featured Annie Gunner Logan, Chief Executive of the Coalition of Care & Support Providers in Scotland, and Dr Donald Macaskill, Chief Executive Officer of Scottish care, the representative body of the independent care sector which includes private, voluntary and charitable organisations and #HighlandHomeCarers. In the report those interviewed discuss many aspects of the current commissioning system, which seems to be encouraging a ‘race to the bottom’ rather than the person focused care that everyone would like to see. They also begin a discussion on what a ‘National Care Service’ might look like and why it is not the panacea that many think it might be.

You can listen in to the report by going to this link within BBC sounds

https://www.bbc.co.uk/sounds/play/p08ns8b3

or alternatively by clicking here on the Good Morning Scotland listen back programme page https://www.bbc.co.uk/programmes/m000lspv

If you use the second link the special report begins at 1.32.20 and continues to 2.o2.59.

My favourite quote from the programme

“There is something wrong with a system when you can earn more for walking a dog in the City of Edinburgh than you can for caring for a human being”

The second part is on next Sunday and I’ll be tuning in.

Let’s make it #FairerforCarers

A good news day for care homes. Visiting to Scotland’s care homes can resume and the UK Government announced that for people who are living & working in care homes in England will receive regular COVID-19 tests from Monday 6th. July. The new testing regime will see Staff tested for the virus weekly while residents will receive a test every 28 days. These new measures will be in addition to intensive testing in any care home facing an outbreak or an increased risk of a surge in cases.

Too late you might argue, when you consider a study from the London School of Economics last month found that care home residents in the UK were more likely to die than in any of the other major European country, apart from Spain. The proportion of residents dying in UK homes was a third higher than in Ireland and Italy, about double that in France and Sweden, and 13 times higher than Germany. At least its a positive step in the right direction.

So how about another positive step in the right direction. Today, alongside 91 other organisations Carers UK have written to both the Work and Pensions Secretary and the Chancellor, calling on the government to urgently raise Carer’s Allowance as part of their #FairerForCarers campaign. Carer’s Allowance is the lowest benefit of its kind at just £67.25 a week in England and Wales. It’s slightly higher in Scotland at the equivalent of £76.10 per week so even the whole country matching this would be an improvement.

You can find out more about the campaign at https://www.carersuk.org/news-and-campaigns/campaigns/fairer-for-carers

Is it perhaps time to write or e-mail your MP about this?

See https://www.parliament.uk/get-involved/contact-an-mp-or-lord/contact-your-mp/

#CarersWeek 2020 #MakingCarersVisible

Her Royal Highness, Princess Anne, the Princess Royal; possibly my favourite Royal because she follows the Scotland Rugby Team, through all their ups and downs; has recorded a special message of thanks and support for unpaid carers to mark this year’s Carers Week. The Princess Royal, who is President of Carers Trust talks about the indispensable role of unpaid carers supporting people who cannot look after themselves because of an illness, disability or mental health problem. She also highlights how hard is for the public to see, far less recognise, just what a difference unpaid carers are making every day to improving the lives of others. You can watch her video below just click on the play arrow.

 

New figures released this Carers Week  (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to an estimated 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness since the outbreak began.

You can read the full report here.

I might not be a fan of her political views but this video from Angela Rayner Chair & Deputy Leader of the UK Labour Party and Shadow first Secretary of State contains the message that I would like all current carers to here.

As we mark the start of #CarersWeek I want to say a huge thank you to the millions of unpaid carers across the UK. You are our unsung heroes, especially during the #coronavirus crisis. I know how tough it can be because when I was still a child myself I was caring for my mother. pic.twitter.com/m5ARzZRiez

— 🌈 Angela Rayner 🌈 (@AngelaRayner) June 8, 2020

As Angela states I also have had many experiences of being a unpaid carer a well as a paid carer like many nurses and healthcare workers. In times of family distress it is often us that our families turn to with some expectation that we will take control and help no matter what’s going on elsewhere. If you are one of these paid and unpaid carers you have my best wishes, admiration and support. Almost always it’s the paid caring role that’s the easiest.

Carers ARE amazing, but it’s because they HAVE to be! So don’t just be sympathetic and  inspired by what they do take action to ensure carers are visible, valued & supported.

You could star by making a pledge for Carers Week at https://www.carersweek.org/

Matt Hancock the Health Secretary posted a video as well but for me adding that one would be a step too far…

For Carers in Scotland During #Lockdown

Yes folks, this is what I look like! With Dr Barbara Sharp a friend and colleague.

Anyone who knows me will be aware that I have great admiration for everyone who is an informal (unpaid) carer, perhaps because I have been one several times myself.  There are almost seven million informal carers in the UK – almost one in ten people. A figure that is rising. It is often forgotten that 42% of carers are men and 58% are women. There value of the contribution made by carers in the UK is £119 billion per year and without them the NHS and social care system would be overwhelmed many times over COVID-19 or no COVID-19.

So at this time it must be particularly difficult. This Blog is a set of resources for them. Recently, Carers Scotland noted that currently reduced or closed care services meant that family members in Scotland were picking up even more care for older, sick or disabled relatives with many of them feeling overwhelmed and at risk of burning out. See their report HERE . So this seems like the least I can do.

Firstly, you can go to the Carers Scotland Website, where you will find a really useful list of Sources of Help and Advice for Carers in Scotland. To find it CLICK HERE.

Secondly, the Scottish Government’s own carers page is HERE 

Thirdly, If you are looking for advice on mental health, adults and the law there is a really useful guide for families and carers on THIS WEBPAGE  from the Mental Welfare Commission. This page also has Frequently Asked Questions guidance for practitioners and formal carers. (Both guides were released last week).

Finally, my own contribution, the video at the top of the page, alongside the contributions of some of the team I work with @AlzScotCPP  All we have done is available on the Alzheimers Scotland COVID HUB.  Where there are some more videos and the accompanying leaflets for my video and the others which we hope will help. They are useful for many carers not just those looking after someone with dementia!

#StayHome #StaySafe

 

Hidden By The Crowd: Covid Advice for the Learning Disabled and Others

I am writing this really to provide some assistance to some of the groups hidden by the current focus on the health of the population. Clearly the messages for everyone of us at this time#StayHome #StaySafe are really important but there are many people for whom that message is really challenging, for example those with Autism or a Learning Disability. What about those who are vulnerable and isolated or who have a dementia causing illness. So this is for them and those looking after them.

So the resources I want to highlight first are from the Social Care Institute for Excellence.  They ahve produced a set of guides for families and professionals supporting autistic adults and adults with learning disabilities during the coronavirus (COVID-19) crisis. There guides, released on April 17th can be accessed HERE

They have also produced a guide for supporting people who are isolated or vulnerable again release only last week that can be accessed HERE This resource contains a great list of things that you can do during lockdown so what it is suggesting applies much further than the groups it targets. Take a look and you’ll see what I mean.

Regarding people living with dementia and their carers, the Alzheimers Society updated their COVID-19 pages on the 16th of April so you can look at their latest advice by clicking THIS LINK

It is very difficult for society’s marginalised groups at this time. While I can’t cover them all I hope this helps a few people.

As for the @NurseBloggers challenge. It will have to wait until next week. The topic is retention… well that will  interesting when you consider what’s happening just now. Will this encourage people to join health and social care professions or will it put them off… what happens in the next month may well shape the whole sectors future.

Suggestions for Things to Do While Isolating

I am going be quite choosy here and not give a huge long list. So let’s start with a brilliant initiative called Luminate@Home. Luminate runs a diverse range of activities and events that celebrates our creative lives as we age. It holds avery successful annual festival here in Scotland that usually takes place in May. In response to the fact that lots of older people at home or in care homes right now who are having to isolate from the wider world for a while they have launched a new programme of online creative activities

Luminate@Home are uploading short films every Tuesday and Friday at 2pm, on Luminate’s facebook page and on their YouTube or Vimeo channels. The films are designed to inspire and guide you through a creative activity that can be done at home or in a care home. The activities are presented by professional artists and feature different arts forms including crafts, poetry, music and dance. The films will be left online so you can access them at any time.

My next suggestion is a Scottish Care initiative called Tech Device Network. They are inviting businesses, organisations and individuals with spare technological devices to donate them to care services. All you have to do is click here to get in touch and tell them what you are able to donate. Scottish Care will then connect you with care services who would benefit from receiving the devices and jointly will arrange delivery/collection. As they state at this time this could have significant benefits for mental wellbeing, reducing distress and maintaining connections with loved ones for a vulnerable population and those supporting them. A meaningful way to connect our communities at this time and hopefully one with long term positive outcomes.

Last suggestion is from the Centre for Better Ageing who put up a useful blog post about keeping active in isolation. Its at https://www.ageing-better.org.uk/news/how-we-can-all-keep-active-home-during-coronavirus-crisis

Remember everyone its important to keep up your strength and balance at this time. Let’s get back out fitter than we were when we got locked-down.

That would be a positive achievement!