Home Care Day: The role of home care in supporting solace at end of life

Katharine Ross, Workforce Lead for Scottish Care, shares her experiences of being part of palliative and end of life care research with home care staff

In my role as the National Workforce Lead for Scottish Care I’m constantly inspired and moved by the dedication of our care at home workforce providing care and support to some of our most vulnerable citizens across Scotland.  I’m pretty much overwhelmed with admiration when I speak to providers and front line support workers about the compassionate palliative and end of life care (PEOLC) they deliver – day in, day out.   

 

A Scottish Care research project I’ve been involved with explored the reality of PEOLC delivery in care homes and care at home organisations from the perspective of front line support workers.   At four locations across the country my colleagues and I were privileged to listen to the reality of delivery end of life care in individual’s own homes.  We heard extraordinary stories of physical, practical, social, and spiritual support - all of which was being delivered by dedicated and committed front line support workers.

 

This is a workforce which, in reality, provides the largest proportion of palliative and end of life care in Scotland -  but whose voice is often unheard and unacknowledged.

A workforce which, sadly, is all too often associated with a “shopping and mopping” service -  and which is not recognised or appreciated for the complex technical, clinical, and emotional support delivered by them day in, day out. 

 

We listened to their experiences and recorded their thoughts, emotions, concerns and ideas.

 

We heard support workers sharing their experiences of caring for older people at the end of their lives, often with little or no specialised training.  One participant said quietly:

“I want to be able to explain to somebody exactly what’s going to happen (when they die).  I want to be able to stop someone being afraid”

 

We also heard about the challenges involved in having open conversations about dying.  As another support worker said:

“I don’t know what to say….it can be overwhelming.  We try and say what we think is right.  It just comes out.…you feel like you’re apologising all the time”

 

 The commitment of the workforce was evident, with numerous examples of activities taking place outside of what we may consider to be a standard working day for a home care front line support worker.  As somebody said:

“We cared for somebody in their own home.  After he died, we went in to strip the bed and return the room to normal because we knew his wife couldn’t handle doing that.  We did it in our own time.”

 

Love and compassion were palpable in every conversation and can be captured in a comment made by one focus group participant:

 “Everyone I’ve looked after….they’re in here.  They’re in my heart.”

 

I suppose what we really captured was the human impact of delivering care at the end of someone’s life, and of doing this in challenging conditions on a regular basis - for multiple people. 

 

For care at home support workers the reality of death, loss and grief is something they’re required to face on a daily basis.  Integration activities and the redesign of primary care provision must therefore embrace this.   Support mechanisms need to be in place to develop enhanced training and education and facilitate the creation of a system which supports solace - not one which commissions and pays for end of life care in the community by the minute. 

 

Our findings have been captured in a report entitled Trees that bend in the wind – which was how one of the focus group participants described what it’s like being a support worker involved in somebody’s dying journey; you have to adapt, change, bend and flex to their individual journey and to experience it with the supported person.  Bending, but not breaking; trying not to lose part of oneself in the process.

 

But at what point do front line support workers break – physically, and/or emotionally?  There has to be greater recognition of the fact that if the frontline social care workforce breaks, so does the entire integrated health and social care system. 

 

Trees that bend in the wind made 12 recommendations.  Some relate to the individual who is dying – for example the development of work which embeds a human rights-based approach to the exercising of choice and control at the end of life.  Dying of frailty or dementia, for example, should have a specific pathway in the same manner as those which have been successfully developed for cancer and other conditions.  Other recommendations relate to the workforce, and to the policy conditions which ultimately dictate practice. 

 

Delivering palliative and end of life care to older people in somebody’s own home requires highly skilled, technical and practical interventions.  It also involves providing emotional support, a familiar face, a hand to hold, family liaison and so many more forms of care and support that cannot be captured in any job title, not least ‘a home care support worker’. 

 

That is why I’m delighted to be working with my Scottish Care colleagues, providers and stakeholders to ensure more people understand the complexity of care at home delivery. 

Please take a few minutes to watch the short Trees that bend in the wind animation and share with your friends and colleagues.  It beautifully captures the loving, dedicated and extraordinary voices of the front line social care workforce.  

I’d be delighted to hear from you so we can ensure these voices are heard more widely. 

 

Katharine Ross

National Workforce Lead – Scottish Care

[email protected]      

@kguthrieross

#homecare17

Home Care Day: The commissioning cycle

Home Care and Commissioning

Maggie arrives with a hello and gets Alastair a cup of tea.  He drinks it, and they chat about how he’s feeling, they chat about his family, the weather, what he has been watching on television, the work he used to do when he was younger, and how he only likes to wear red socks.  It doesn’t really matter what they talk about, he feels valued, and so does she.  She is the only person he sees most days.  Maggie has been a paid carer for Alastair for 18 months.  She supports him to get ready for bed and makes sure he is comfortable before leaving. She feels satisfied.

Maggie arrives with a hello and reaches for the telephone. She clocks in. She used to get Alastair a cup of tea but now she knows that, as she has to clock out in 15 minutes, she had better get on and get him ready for bed first.  As she changes him, she avoids asking about how he is feeling or his family because she worries that she may not have the time to sensitively finish the conversation.  They chat about the weather, what he has been watching on television.  It matters what they talk about, but in reality, they don’t talk, at least, not about what matters.  She is the only person he sees most days.  She helps him into bed, clocks out and leaves.  She feels unsatisfied, the value is lost.

  1. Analyse – what already exists, what needs to exist, what could exist?  All too often I am hearing of ‘just-in-time’ purchasing of a service, similar in behaviour to the way you might nip out to buy a pint of milk when you realise you have none left for your cuppa.  Now I really like my coffee, but in no way can I compare that to how I value a human being.  To do so is wholly undermining and lacks dignity and respect.  Good commissioning  needs to be done with the individual, with the purpose of achieving outcomes, and accounting for both the local and national context, considering e.g. market availability (what services are out there and are they the right ones, what can the community offer) and workforce (are there enough staff, and can they do/are they supported to do what they are needed to do).  The interdependencies of these cannot be appreciated with ‘just-in-time’ purchases. Decisions need to be made around how we make sure the right services are available and paid for.  Long-term commissioning will give services and those who use them greater security which will reflect in their success and sustainability.  Long-term contracts (so long as they have flexibility for review), reduce the number of tenders which is more efficient for both provider and commissioner. 
  2. Plan – so much of everything is in the planning.  Take all that you discovered in the Analysis stage, and develop a way to implement it.
  3. Do – time to put the planning into action.  If parts 1 and 2 are right, this should be the easy part.
  4. Review – what works, and what needs to change to make it work?  Are there examples of innovation that could be shared and learned from?  I often hear that this part of the cycle is delayed or even overlooked, because the system is so busy having to respond to the ‘just-in-time’ position described earlier.  But this part is important - this is where we find out if there was enough flexibility and choice in the  commissioning plan, and if it is actually making the right impact.  Is the person receiving care being supported to achieve outcomes – ask them, their carers and the staff who support them, review their care plan.  Is the system working - look for barriers, ask how does the plan fit in to the national and local context?  What impact is it having?  Every integrated authority has a commissioning plan, it is time to analyse their impact as is appropriate – just the same as should be done with local and spot commissioning.  I agree that some of the questions raised may be difficult to find answers to, but they are necessary and must be addressed.

To proceed, go right back to 1. Analyse

You see, commissioning is a process, it links everything together, from individual to community, from local to national, operational to strategic, and the innovative to the static.  Fundamental to the process is involvement – providers and people who use services need to be present and their contributions accounted for throughout the cycle.  Call in the experts, they live it, they know where the gaps are, what is the most important, and what can be done realistically.  The best commissioning I did had a Board consisting of 50% professionals and 50% service users.  It is time to remember the importance of that process and the significance of each part of the cycle as it is key to supporting a human rights based approach to care, and is particularly crucial amidst the current context of 'more for less'.  It is time to stop responding with procurement, and start properly commissioning.  For Alistair and Maggie and all of our futures.

It is time to care about care.

 

Karen Hedge
National Director
Scottish Care

@hegeit

#homecare17

Home Care Day: Community enterprise in care at home

Julie Fraser, Care at Home Development Officer for North and West Highland, shares lessons from a new approach to commissioning and delivering home care in the Highlands

What?

  • Community Led Care at Home Provision
  • Local care workers employed on flexible contracts to deliver local care
  • Co-ordinated from within the locality
  • Communities identify their own needs and models of provision
  • Tailored to each locality incorporating existing innovation
  • Traditional Care at Home has historically struggled to provide consistent service in some areas of the Highlands

 

Why? And How?

  • Smaller, more sparse population; geography; and recruitment in more remote areas have traditionally been difficult to overcome
  • Communities are best placed to understand their own needs and to understand how traditional hurdles can be overcome
  • Local, community led services are more sustainable, flexible and can offer more personalisation
  • Communities need to be consulted and engaged with to explore the issues with provision and potential solutions
  • Often there are existing Community Groups or Charities who may wish to explore developing further services to meet the community need
  • Interested individuals can come together to form a committee
  • Local workers are then recruited to work flexibly
  • Local Co-ordinator manages the staff team and the care provision

 

Communities can be supported in various ways to achieve this:

  • A partnership with an existing Care Provider can support the Community Enterprise, taking regulatory, financial and management responsibility
  • A Community Group can be supported to become a small, community led care provider in its own right
  • A Charity can be supported to develop additional services
  • A Social Enterprise Model can be used where profit goes back into the community to further develop innovative services

 

Resources available to support Communities include:

  • A Complete Start Up Information Pack – includes all relevant legal information as well as business management support
  • Scottish Care Development Officers – roles to support development
  • Independent Providers- some existing independent Care at Home providers are supporting the development of organic community led services, they offer business support as well as help with recruitment
  • Community Learning Exchange Fund – this new fund has been introduced by NHS Highland to allow communities to visit other Community Enterprise Care at Home models in order to share learning, experience and good practice
  • Training is accessible through partnership collaboration

 

Benefits to the Service User and Community:

  • Locally led care- communities are empowered to design their own
  • Locally based workforce- rural communities are retaining skilled jobs in their own areas
  • Localised care provision- service users confident in consistent care provided at a high quality from local people
  • Flexible, reactive, local service which is person centred and community led

 

Benefits to the NHS:

  • Community Enterprise Care at Home is successful and sustainable
  • Community Led Care at Home meets the needs of local areas in a way that a larger model could not
  • Community led Care at Home allows refocus of NHS in-house service
  • Greater collaboration between NHS and all external providers has led to closer working relations, stronger communication and ultimately a more streamlined process for Service Users

 

What have we learned already?

  • Not one size fits all- each community is unique and care services must fit the unique needs and assets of each community
  • Collaborative working and strong partnership relations are key
  • NHS support the start up of Community Enterprise Models by identifying hours of work in each area and work in partnership to ensure that the transfer of work is carried out smoothly
  • Communities are keen, knowledgeable and able

 

Next Steps

  • Partnership working and honest collaboration with the NHS is key to the process and to future sustainability of community led services. The process of setting up or registering a new service takes time so we cannot expect instant results- but what we have found is that when it works, it works well.
  • Many areas of Highland could benefit from community led models of care and we have an opportunity at present for communities to be empowered to design and develop services.
  • We would encourage communities and existing providers to really explore the benefits of such models of community led care – particularly in the more remote and rural areas of Highland where traditional service is difficult to sustain. We have the resources to help ensure that quality care services can be accessible and available across Highland.

 

For more information about the Community Enterprise Care at Home model, click here: https://www.scottishcare.org/wp-content/uploads/2017/10/Community-Enterprise-CAH.pdf 

Julie Fraser

Care at Home Development Officer, North and West Highland

Partners for Integration and Improvement

Scottish Care

@partnersforhsci

#homecare17

Home Care Day: Commissioning for outcomes

Collaboration in Care at Home in Highland – Commissioning for Outcomes

Highland has one of the most advanced cross sector collaborative relationships when we talk about care at home.  Since 2014 the independent care at home sector has collaborated with the NHS and with each other to ensure that high quality care at home provision is accessible and sustainable across Highland.

We are now taking our next big leap in this collaborative relationship and working more closely as a sector and with our NHS colleagues to develop a quality and improvement process and to begin the shift to an outcome focused approach.

The NHS commissioners have worked alongside the independent sector, via our Scottish Care Development Officers, to design and begin to implement a new outcome focused approach to both the commissioning and delivery of care at home services.  In this collaboration the NHS commissioners have co-designed and co-produced a new commissioning approach which is based on meeting personalised outcomes for service users - rather than the traditional “time and task” focus.  The whole sector has been involved in the design of this new way of working – to ensure that it is effective, efficient and achievable. 

In Highland we really are ahead of the game in terms of working in collaboration across sectors and planning for development of pan-Highland coverage.

In order to develop person centred, outcome focused care we have to work in collaboration - commissioning needs to be outcome focused and more flexible in order to allow the providers to deliver more outcome focused and flexible care which in turn allows the service user to experience personalised, flexible care to meet personal outcomes

Julie Fraser

Care at Home Development Officer, North and West Highland

Partners for Integration and Improvement

Scottish Care

@partnersforhsci

#homecare17

Home Care Day: Hear from home care workers about gaining registration qualifications

As part of Home Care Day's Workforce hour, we're sharing some SSSC case studies from home care workers who have achieved qualifications to meet their registration requirements.

Take a look here: http://ssscnews.uk.com/2017/07/19/are-your-workers-concerned-about-gaining-a-qualification-for-registration-hear-from-some-workers-who-say-there-is-nothing-to-worry-about/

The SSSC also recently undertook a Q&A with a home care support worker about her role and her recent return to studying.  Read all about it here: http://ssscnews.uk.com/2017/10/25/celebrate-careathome-housingsupport/

#homecare17

Home Care Day: Our workforce winners

The care workforce is what makes home care services, so who are these people? We certainly don't hear a lot of good news stories about them in the media! So Home Care Day 2017 is an opportunity to hear about and celebrate the passion, skills and dedication of home care workers. Here are just three examples of the cream of the crop - finalists in this year's Carer of the Year category at the Care at Home & Housing Support Awards.

Do you know someone who works in home care who should be celebrated for the amazing work they do?  Let's shout about it!  #homecare17

Home Care Day: The unsung heroes of social care

The Unsung Heroes of Social Care

When asked to contribute a piece for Home Care Day in my role as Workforce Development Consultant with Scottish Care I was filled with trepidation.

I appreciate that this is not the most positive start to a blog, but please bear with me.

Having previously held a senior role within the Care at Home service of a Local Authority and currently welcoming a Care at Home service into my own home four days a week, my concern was just what to highlight and how to do justice to the work carried out from the earliest hours of the morning to the latest hours of the night, 365 days a year.

It is my belief that the thousands of care at home workers doing their job all over the country are the unsung heroes of social care.

We live and work in a time when the demand for care services is unprecedented, while the financial resources to provide them has never been more strained.

As a nation we are living longer – which is extremely positive!  However we are not necessarily any healthier, with the same level of critical health needs per head of capita as before.

This means that there are many more of us needing care and support to maintain our independence than at any other time in history – and the people at the forefront of the action are our care at home colleagues.

It has often irked me over the years when the work of home-carers has been discussed almost dismissively by those who have had no experience of either carrying out the work or of receiving the excellent services provided.  Never more so than when the carer themselves have uttered the self-deprecatory line 'I'm just the carer'..!

The role of home-carer has always been incredibly complex and has become increasingly more so over recent years as people live in their own homes longer with more needs to be met.

To enter someone's home is a deeply personal thing; to then provide intimate personal care intensifies this.  Add to this providing nutrition, emotional support and assistance with the medicines that keep people well and we get a sense of the importance of the role and of the individual carrying it out.  And all measured out in minutes.

The people who carry out care at home begin work before many of us have pressed 'snooze' on our alarms for the first time and finish work when most of us have turned off our bedside lamp and closed our eyes.  At this time of year they are being soaked by rain and chilled by wind as they go about their business of providing the precious gift of being in their own home to the most vulnerable of us.

Could you do it? And with good cheer?

It takes a very special person to be a good care at home worker. They are our unsung heroes.

 

Paul O'Reilly

Workforce Development Consultant, Scottish Care

@WorkforceMatte1

#homecare17

Home Care Day: Guest blog from Visioncall

‘A clear vision… why sight matters’

Today is Home Care Day, a day where we can all come together to raise awareness and champion everyone and everything which makes the Scottish care industry great.

Over the course of today Scottish Care will be celebrating a different aspect of home care, and over the next hour there we are focusing on vision.

Having a strong and clear vision of where we take care in the future is important as it gives us direction and ultimately helps us improve the wellbeing of those in need of care.

We have got involved today to help promote this message, but also to get our colleagues within the home care industry to think about our own vision in the sense of how we see the world around us, and how together we can really make a significant difference to the lives of so many people in care today.

Our core belief here at Visioncall is to enrich people’s lives through better vision, and we are able to make this a reality for so many people in care across the country every day.

But there is still so many more we can be helping see the world better and improve their daily lives:

  • Currently 50% of older people living in care are believed to have some form of sight loss, and 70% of people in care are living with dementia or severe memory problems.
  • Living with poor vision has a significant impact on most daily activities we can easily take for granted.
  • Reading, identifying hazards and even seeing the food on our plate, all becomes a major challenge if you are living with poor vision.

For someone living with a form of dementia this only becomes a more urgent need.  Dementia itself is the common term applied to describe a range of losses in brain function.  This means that the person will have a condition which will severely impact their personal, social and occupational life.

Our vision greatly impacts how we are able to interact and better understand the world around us.

Helping a person to see better simply means that they can better engage with the world around them, promote their independence and have a better quality of life

At all stages of life it is so important that you receive regular sight tests to maintain and improve your vision.  A simple sight test can achieve this and also help to identify some underlying health issues.  Our skilled optometrists do this every day in comfortable and familiar surroundings within the person’s residence.

Visioncall are proud to assist thousands throughout the country to help those most in need to achieve better vision.

Last year along we helped an elderly person see the world better every two minutes and 42 seconds.  We aim to beat this time moving forward and help even more people live a better life with improved vision.

If you currently oversee someone’s care and want to help them achieve better vision, click here: http://www.vision-call.co.uk/campaigns/free-home-visit.php

 @VisionCall

#homecare17

Home Care Day: Join our Twitter discussion at 12pm

To celebrate 'Vision' hour of Home Care Day 2017, Scottish Care will be hosting a Twitter discussion between 12pm and 1pm.

Throughout this hour, we hope as many people as possible will engage with us and share their hopes for the future of home care in Scotland.

Join us at @ScottishCare and tweet your thoughts using the hashtag #homecare17

We'll be kicking off the hour by asking:

Home Care Day: Guest blog from Maggie Dowe, Care and Support at Home Development Officer

Maggie Dowe, Care and Support at Home Development Officer who is leading on the Care at Home Reform project, shares an update on her findings for Home Care Day 2017. The final research report will be launched in late November.

The project and research aims to improve the understanding of the issues impacting the care and support of people at home across Scotland.  Working across sectors and with national and local partners, it will support an improved understanding of the challenges and the reasons behind them.  It will produce an evidenced based, informed set of recommendations to address these challenges.  Throughout it aims to identify and evaluate innovative and sustainable models of care and support at home, workforce compositions and commissioning and procurement methods.

Throughout the study some key principles have emerged. The research has shown that Health and Social Care Partnerships (HSCPs) and providers are struggling to deliver services where there is a continuing increase on demand both in terms of volume of people and more complex needs.  The evidence suggests that services for older people are much less outcomes focussed and personalised and that if things to do not change this pressure will only result in reduced quality services for older people in Scotland

In order to alleviate pressure on the system whilst delivering the best quality and outcome focussed support we need to start thinking a little differently. Although a lot of the principles outlined in the research are not new, it is about ensuring we deliver consistent quality services across Scotland.

Services and systems which focus on prevention and promoting independence deliver better quality support.  Some of the evidence suggests people with individual budgets or just more choice and control actually have reduced packages of support.  A one size fits all approach is much more common in older people services compared to other adult social care.  This is unfair and unnecessary.

Services which are joined up and include a holistic assessment process also produce better outcomes for individuals and reduce resource requirements. This assessment process should also have Technology Enabled Care embedded into it. It is not about replacing the human aspect or cutting costs. Although evidence shows TEC can provide cost savings. It is about promoting self-management and independence.

We need to empower the frontline staff to be able to make decision and have level of autonomy to make services flexible.  This does reduce pressure on the system and ensures people receive the most appropriate support at the right time.

We also need to have a strength based approach to assessment, support planning and managing ongoing support.  Understanding someone’s own capabilities, their networks and the community provisions can change their life whilst providing clear efficiencies in the system

These things are not easy – otherwise we would all be doing it.

There are financial challenges and in some cases change will require upfront cost and restricting a system. However, long term a focus on prevention, self-management and strengths will provide savings whilst continuing to meet people’s needs. But the whole thing works when we recognise each stakeholder’s role and value their contribution.

We need to be brave – think differently.  Share information and best practice.  We also need to understand we can deliver personalised support in the current financial climate if we all work together.  Care and support at home services are literally changing lives and will continue to do so.  The value of the work being carried out cannot be underestimated and I hope we continue to create a system that delivers on more people’s outcomes.

Quotes from individuals when asked, 'what difference does your care and support at home service make to you?':

‘It has been phenomenal’ – Carer for elderly mum and partner

‘I couldn’t have managed at all’ – Individual in older person’s service

‘I really appreciate every day they are here’ – Individual in older person’s service

‘Everything! No way I could do without it’ – Individual in older people’s service

‘I wouldn’t be able to get washed, dressed or even do my make-up. Stuff other people take for granted’ - Individual with physical disability

‘It cheers me up’ – Individual in older people’s service

‘It stops you having to go back to hospital. It keeps you sane’ – Individual in mental health housing support service

‘I wouldn’t be here without it -’ Individual in learning disability service.

 

Maggie Dowe

Care and Support at Home Development Officer

@socworkscot

#homecare17