The CAPE Anthology: Raising Awareness.
Dispelling the myth that Carers are Superhuman. Care, be Aware, Prepare & Engage (CAPE).
Dear Reader,
Care, be Aware, Prepare and Engage. CAPE
Irrespective of whether you are a caregiver, we’ll all need some care support at one point in our lives. I recommend gentle curiosity to increase awareness and be primed for when you will give/need care support.
Every country has a different healthcare system, social care system/services, and its own pros and cons. Let’s be mindful that access/availability and ability to finance care support and services differ for each of us.
CAVEAT 2025 I’ll share more information and press releases from evidence-based, official sources, with limited personal commentary. I’m not an expert on healthcare systems or services in the UK or USA, and I want to ensure readers receive referenced facts.
The Table of Contents:
UK’s Personal Independence Payments (Pip): Eligibility for the main disability benefit will be narrowed.
The Hidden Crisis of Caregiving: Professor Joan Tronto, Ai-jen Poo and Emily Kenway.
Commentary on the research work of Carers UK and other Caregiving organisations in the UK
1. UK’s Personal Independence Payments (Pip): Eligibility for the main disability benefit will be narrowed
A) A review of events leading up to the PIP announcement by Liz Kendall, Secretary of State for Work and Pensions (DWP)
B) PIP cuts and unpaid carers. Call for radical re-thinking of employment for carers By
Having gone through the arduous task of applying for PIP for my older brother who has late diagnosed learning difficulties and autism, I am all too familiar with this benefit. Thankfully I was successful and he was awarded an Enhanced PIP, the most he can get. Winning this has made a huge difference to his life enabling him to pay for a PA/Support Worker to visit him through the week to help him with organising and managing his time, money, flat, emails, bills etc. She has been an enormous support, and without her, he simply wouldn’t manage. In addition, having an Enhanced PIP has granted him that all important recognition of need by social services; they use it as an indicator of need.
2. UK National Health Service (NHS), Social Care and HealthCare
Independent Investigation of the National Health Service in England. The Rt Hon. Professor the Lord Darzi of Denham OM KBE FRS FMedSci HonFREng (September 2024)
Key statistics on the NHS Get the facts behind the headlines with our compilation of key NHS statistics. The NHS facts and figures apply to England, unless otherwise stated. (18 August, 2023)
NHS Confederation. “What we do. We empower and support healthcare organisations to improve population health, deliver high-quality care and reduce health inequalities."
Community Health Services Explained The Kings Fund (4 July 2024)
Welcome to Change.NHS: Help build a health service fit for the future
Our NHS is broken, but not beaten. Together we can fix it.
The NHS has been there for us for over 76 years. But to make sure the NHS is here for the next 76 years, doing all it can to support the health of everyone, we need your help.
We want to have the biggest ever conversation about the future of the NHS.
It doesn’t matter whether you have a lot or a little to say. Your views, experiences and ideas will shape a new 10 Year Health Plan for England.
The NHS Consultation: Give your feedback. A questionnaire, feedback on your NHS experience, improvement ideas, opinions and feedback on the consultation.
Be Aware: Autumn ADASS Report on Social Care & Carers UK Press Release Response. Unpaid carers are already overburdened, and now the government aims to 'shift' more care from hospitals to the community.
Carers Rights Day UK, (November 21, 2024). Advocacy and empathy for each other in our communities. iCARE Stack support.
An Introduction to the NHS (There is a video that, to me, highlights just how convoluted and difficult it is to understand the NHS, how it works and how it’s funded).Text from the website:
The NHS is a complex system, which can sometimes make it difficult to understand – especially working out who is responsible for what. It’s made up of a wide range of different organisations with different roles, responsibilities and specialities. These organisations provide a variety of services and support to patients and carers.
Over recent years there have been changes to the way the NHS is structured and works. The likelihood is that you may not have even noticed this – it won’t have affected how you access your local doctor or hospital. But the changes have affected who makes decisions about health services and who holds the budget to pay for these services.
2. On the Cusp of Caregiving
Checkpoint: 'Are you a Carer?' Many people don't consider themselves to be a Carer until a Crisis happens. Here are some useful UK definitions, facts, figures, and signposting to support you. November 11 2023.
US Specific:
Caregiving 101. It Helps To Be Prepared. By
. Publication: Ageing WellNavigating access to care support in the US is a section the Giving/Receiving Care Anthology
3. Carers Week 2024 (June 10 - 16)
Carers Week UK. June 10-16, 2024. Unpaid Carers have 'No choice to care'. Can you support caregivers?
'Care in the UK. 10 Facts Which Shock'. Realities and a Recommendation Updated Wednesday, October 30th, 2024 following the Autumn Budget, by the Chancellor, Rachel Reeves MP
'Young carers and Young adults are Caregivers. The hidden crisis is ageless.' Let's ensure Children/Young adults know their rights and where to get support.
UK: Carers Allowance. Attendance Allowance. Two benefits. One for the Caregiver and the other for those receiving care.
Carers UK: 'Planning ahead, helping a loved one'. Animation 'Managing someone else's affairs.'
It’s worth remembering that slight differences exist in different parts of the UK (England, Northern Ireland, Wales and Scotland.)
4. The Hidden Crisis of Caregiving: Professor Joan Tronto, Ai-jen Poo and Emily Kenway.
‘An Introduction to Caring Democracy’, by Prof. Joan C Tronto Access Minnesota's Jim Dubois' Interview (July 15, 2014).
Emily Kenway Interview Love and Caregiving go Hand in Hand on Amanpour and Company June 5 2023.
Emily Kenway's 'Who Cares: The hidden crisis of caregiving and how we solve it'October 24 2023.
Ai-jen Poo Executive Director of Caring Across Generations in the US and President of the National Domestic Workers Alliance. Chris Hayes Podcast (MSNBC). January 21 2024.
'A Q&A with advocate and activist Ai-jen Poo on how to break the isolation of caregiving'.By
. Publication: 'Living in 3D: Divorce, Dementia and Destiny'.
5. Personal Commentary on the research work of Carers UK and other Caregiving organisations in the UK
Commentary: Carers Allowance Overpayments. Can you get your head around these facts? (July 29, 2024)
New Rights - The Carers Leave Act. (April 6 2024) Carers UK and Government website information.
Commentary: 'Nearly half of working age carers lose £12,000 of income per year because they provide care'.(15 January, 2024)
Commentary: 'Burning' There was no holiday for many Carers. (January 11 2024.)
Commentary: 'Carers UK State of Caring - Health Report 2023.'Being a Caregiver impacts our health and wellbeing. Connecting, sharing and supporting other Carers helps you realise you're not alone. (November 5 2023.)
Commentary: State of Caring - The impact of caring on (Finances)Carers UK Report (October 17, 2023)
6. The Carer Mentor Mission
Context: As the population ages, a whole new generation is added to our lifespan - an ageing population, a ‘5 generation’ workplace’/economy & a ‘Sandwich generation’ that is burning out. (see Interview Chris Hayes Podcast with Ai-jen PooExec Director of Caring Across Generations in the US).
The Problem: There is an increased need for care that has outpaced the change in policies and infrastructure. There is a hidden crisis as caregivers struggle to do everything themselves; long battles with bureaucracy and difficult access to care support exhaust whatever energy remains after working. Compounded by the fact that everyone’s trying to make ends meet financially. So, conversations are ‘put off’, and denial and discomfort simmer until a medical crisis occurs.
How do we improve the situation and match the needs of the growing, ageing population? How do we care for our loved ones today, and who’ll look after us later? There is a collective social need for change.
The Idea: We can start by changing the narrative around care and caregiving - let’s start having more discussions within our families and with others and creating solutions in our communities. While I hope we can advocate for changes in policy and with governments, I’ve seen the most powerful, effective solutions being made between 2 or 3 people sharing daily tasks and errands. E.g. shopping, picking up medications, and driving to medical appointments.
We can make a difference—one cup of tea/coffee, one errand, one conversation at a time. Define your care team. Build your Caring Community.
Disclaimer: The information shared here is in the public domain and is presented as a personal opinion. I'm not employed or paid by any charity or Carer organisation. Please note that the UK government gives specific guidance for charities or non-profit organisations concerning campaigning and political activity. This is a personal commentary and opinion, and I’m stating independence from these organisations for advocacy purposes. Government Guidance website: The Purpose of this website is not political. It is to raise awareness of caregiving and support individuals.
7. iCARE Stack
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