Welcome to a blog site of former carer Matthew McKenzie from South London. I used to care for my mother who passed away this year. For close to 18 years I have been supporting her and my brothers who both have autism, but for my mother she had a difficult time with mental health. There was only so much I could do and a lot of support depended on health and social care services that were already struggling.
Welcome to the April update of the Southwark Mental Health Carers forum. Just a short intro about the forum. The forum is aimed at carers who care for someone with a mental illness. I obviously try to aim the forum at carers based in Southwark, but we often ask for engagement with MH, health services, commissioners and social services.
All my carer forums including carer peer support groups are run via Zoom due to the COVID-19 crisis.
10 Helpful Hints for Carers: Practical Solutions for Carers Living with People with Dementia – June Andrews, Allan House
10 Helpful Hints for Carers is an easy-to-read guide for carers living with people with dementia. It provides simple, practical solutions to the everyday problems family carers can face when looking after a person with dementia.
A Carer’s Chaos – Julie Nancy Wiltshire
When Julie Wiltshire’s husband, David, was diagnosed with cancer twice, he faced a series of treatments made all the more difficult by multiple complications. In A Carer’s Chaos, Julie records the details of David’s long journey of cancer treatment, but also offers a unique perspective into life as a carer to a loved one, exploring the love, hate, anger, loneliness and fear experienced on a daily basis by a carer.
A Carer’s Odyssey – Anna Chan
In the first part of A Carer’s Odyssey, Anna Chan describes how she and her husband Jeff were devastated 16 years ago by the diagnosis of their daughter Emma’s severe neurological disorder, called Rett Syndrome.
A Gift for Carers – William Long
This book was written following the author’s personal struggle with the psychological and physical pressures of caring for his mum. His experiences and research led him to develop a solution which counters the devastating effects of what the medical world refers to as “Caregiver Syndrome.” He identifies seven areas that make for a joyful life.
A Gradual Disappearance – Elizabeth Lonseth
“Dementia is like a maze. Its victims get lost in the labyrinth of their own minds, bringing confusion and despair to themselves and to others around them. Families watch helplessly as their loved ones drift further and further away from reality, and when decisions are made, emotions often get in the way of what is really necessary.” – Dr. Sameh Elsanadi, MD Geriatric Psychiatrist
An Introduction to Coping with Depression for Carers – Tony Frais
Looking after a person with depression can often leave carers emotionally and physically exhausted. This short, straightforward and easily understandable guide offers valuable advice on how carers can
BMA Carer’s Manual – British Medical Association
Endorsed by the British Medical Association, this is the definitive guide to caring for the elderly or sick, offering practical advice and solutions for everyday concerns such as adapting living space and safe movement and handling. Step-by-step sequences explain essential activities such as helping someone in and out of a chair and special features focus on topics relating to common conditions.
Carer’s Bible – Amanda Waring
This accessible and detailed guide includes practical tips, checklists for best practice, descriptions of their experience from a wide range of carers that addresses solutions to common problems, and expert advice on how to deliver compassionate and dignified care to older people.
Caring for a Loved One with an Eating Disorder – Jenny Langley, Janet Treasure, Gill Todd
Caring for a Loved One with an Eating Disorder: The New Maudsley Skills-Based Training Manual provides a framework for carer skills workshops which can be used by anyone working with these conditions.
Confidence to Care: A Resource for Family Caregivers Providing Alzheimer’s Disease Or Other Dementias Care at Home – Molly Carpenter
Confidence to Care is the essential handbook for the family caregiver offering practical insights to understanding, managing and preventing the behavioral symptoms associated with dementia and Alzheimer’s disease. Touching, personal stories come together with practical and easy-to-access tips and techniques drawn from decades of caregiving experience by internationally-recognized experts.
Guide to Mental Health for Families and Carers of People with Intellectual Disabilities – Geraldine Holt, Anastasia Gratsa, Nick Bouras
A practical and comprehensive introduction for carers to mental health problems, this accessible guide outlines a range of signs and symptoms of mental health problems that can affect people with intellectual disabilities. The guide explains why mental health problems develop, and advises on what can be done to help people with intellectual disabilities and carers themselves.
Living with Dying: A Complete Guide for Caregivers – Jahnna Beecham, Katie Ortlip
- This easy-to-use guide for caregiving instructs you how to:
- Have the conversation
- Navigate the emotional and spiritual journey
- Control pain
- Address symptoms
- Work with hospice
- Care for yourself
- Get your loved one’s affairs in order
Mindfulness for Carers: How to Manage the Demands of Caregiving While Finding a Place for Yourself – Cheryl Rezek
Carers are particularly vulnerable to feeling stressed, worried and worn down by the vast demands that often come with caregiving, be they physical, psychological or emotional. Mindfulness can be enormously beneficial to carers, whether professional or voluntary, as a means of developing greater inner stability, resilience and gaining more control over their thoughts, feelings and emotions.
No Saints Around Here: A Caregiver’s Days – Susan Allen Toth
When we promise “in sickness and in health,” it may be a mercy that we don’t know exactly what lies ahead. Forcing food on an increasingly recalcitrant spouse. Brushing his teeth. Watching someone you love more than ever slip away day by day. As her husband James’s Parkinson’s disease with eventual dementia began to progress, writer Susan Allen Toth decides she intensely wants to keep her husband at home—the home he designed and loved and lived in for a quarter century—until the end.
Self-Care for Caregivers: A Twelve Step Approach – Pat Samples, Diane Larsen, Marvin Larsen
For those serving as a caregiver for a loved one, the authors of this down-to-earth, encouraging book can help you make the most of the experience without losing yourself in the process.
Supporting Families and Carers: A Nursing Perspective – Mary E. Braine, Julie Wray
Understanding the perspective of carers is an essential aspect of nursing. Supporting Families and Carers: A Nursing Perspective offers insights into the fundamental principles of caring for families and carers irrespective of age, gender, ethnicity, sexuality or religion.
Take Care, Son: The Story of My Dad and his Dementia – Tony Husband
Hi Dad . . . can we have a chat about your dementia . . . Can you remember how it started?
When Ron Husband started to forget things – dates, names, appointments . . . daft things, important things – it took a while to realise that this was ‘a different form of forgetting’. But it was just the first sign of the illness that gradually took him away from the family he loved.
The Carer’s Handbook: Essential Information and Support for All Those in a Caring Role – Jane Matthews
This indispensable guide aims to be a one-stop-shop for the huge percentage of the population who, now or later, find themselves in a caring role, whether that involves shopping for a housebound neighbour, or giving up work to care full-time for a disabled child or confused parent.
The Complete Carer’s Guide – Bridget McCall
There are around six million carers in the UK, a figure estimated to reach nine million by 3037. Being a carer can be rewarding, but it is often stressful and exhausting: it involves a range of tasks, such as providing personal care, managing medication and ensuring that the needs of the person being cared for are met. This practical, much needed guide discusses how to ensure that you have a life of your own while caring, how to make informed decisions and, most importantly, how to access the support and help you need.
The Essential Carer’s Guide – Mary Jordan
Illustrated with individual case stories, this book covers physical, social, and financial needs, across the stages of immediate, intermediate and advanced care. It is useful as a practical companion for those caring for, or responsible for the care of, an elderly friend or relative.
The Selfish Pigs guide to caring – Hugh Marriot
Over six million people in the UK…provide unpaid care for disabled or elderly relatives, friends or neighbours. Their job is long, lonely and hard, yet there is limited support and no formal training. As a result, carers suffer frequent damage to physical and mental health. Oddly, though carers by definition are anything but selfish pigs, they are liable to feelings of guilt, probably brought on by fatigue and isolation.
Where There is No Psychiatrist: A Mental Health Care Manual – Vikram Patel
Even though mental illnesses are common and cause great suffering in every part of the world, many health workers have a limited understanding about mental health and are less comfortable dealing with mental illness. This book is a practical manual for mental health care for the community health worker, the primary care nurse, the social worker and the primary care doctor, particularly in developing countries.
Young Carers and their Families: Working Together for Children, Young People and Their Families – Saul Becker, Jo Aldridge, Chris Dearden
Young carers are children and young people under the age of 18 who provide care for an ill or disabled parent or relative in the community, usually within their own home. They perform many of the same domestic, caring and other duties as adult carers but often without the recognition and support received by many adult carers.
What is it like to live with someone suffering from a mental illness? I felt it was about time to do a quick write up about the situation. This time I decided to collaborate with someone living through a mental illness in order to get their views.
The collaboration was from an experience mental health survivor Jessica Temple who has her own YouTube Channel.
We both did a video where I talk about my role as a carer and Jessica who is from the States talks about her experience as a Care Taker.
Hi everyone. Welcome to another one of my carer videos. Although my videos are mainly there to raise awareness of mental health and mental health carers, I hope all who view them find such videos educational. As a note, a carer is someone unpaid who is caring for a relative, friend or neighbour. Carers usually care for someone who is unable to care for themselves and they do not have to suffer old age difficulties.
I was so chuffed to be asked by Matthew to do a guest blog. Matthew is such a star raising awareness about carers’ issues that I feel honoured that he has asked for my views!
I regularly do a slot at Corporate Induction for South London and Maudlsey NHS – “What it feels like to be a carer?” . It is great to have a “captive audience” to get the message across about the valuable work that carers do and how involving them has a real potential to make the medical professionals’ job easier – not more complicated as is often believed to be the case.
On the 28th of June, I attended the Lewisham Healthwatch & Save Lewisham Campaign “Winning the Best Community Health Care” Event.
This took place at Lessof Auditorium, Lewisham Hospital. The event was mainly for interested parties, where we had representatives from SaveLewishamHospital Campaign, Lewisham Carers, LeSoCo, Voluntary Action Lewisham, Lewisham’s Health & Wellbeing Board, some of the Lewisham’s Councillor’s, Lewisham’s Young Advisors, Lewisham Disability Coalition and many more.
As you can tell from the list above, many groups and organisations attended, but What is Healthwatch?
Healthwatch is the national consumer champion in health and care. They have significant statutory powers to ensure the voice of the consumer is strengthened and heard by those who commission, deliver and regulate health and care services.
You can find more about Lewisham Healthwatch below.
This event was also a joint event with Save Lewisham Campaign
Save Lewisham A&E was set up by local organisations, residents, Dr’s, nurses, therapists and patients because they do not believe the Tory-appointed Trust Special Administrator should jeopardise the health of South Londoners to pay for debts that were caused by years of political mismanagement.
You can find out more about them below.
Going back to the event. On the day we looked into what makes community Health care brilliant, identified healthcare that needs to be cherished to ensure future community health care.
We also learned from people’s stories about community healthcare, which gave us ideas in order to build a vision for what the best community health care could be for Lewisham.
You might have probably already guessed it, but this blog is based in the UK and mentions many UK mental health organisations off my links page. I often try to go to mental health or health community events or meetings and the “Winning the best community Health care” event was the latest.
I think we had around 40 or more turn up to the event to give their ideas about what makes the best community health care.
There are cuts coming to the NHS and these cuts will create many problems, Perhaps no one will receive the quality of health services like they did before. There is a risk that privatization will not hold patients interest at heart, plus the cuts won’t stop at the NHS, it will hit quite a lot of voluntary organisations which already are under pressure from limited funds.
Lewisham Hospital had a campaign to save the A&E, which was a long and hard fight that ended in success, but even still the hospital is under threat.
Recently the six Clinical Commissioning Groups which commissions or buys services for the doctors are running their plan for integrated care across south London. There is a lot of planning and consultancy the will be needed.
So how do we tackle such problems?
At the event we needed to define what is community health care. We have to understand that quantitative health care does not make qualitative community health care. Before this event, Lewisham Healthwatch collected over ‘100’ stories from those who used community health care in order to discern the very qualities of health care.
Throughout the day we as a group worked on declaring a vision for the perfect community health care system, we also had several members in the group produce their own ideas about burning issues for enhancing community care, which was followed by a brainstorming session.
So how did I think the event went?
To be honest, before I turned up to the event, I was not sure what to expect, but by the end of the day I could say that there was so much I learnt. I felt empowered giving my views as a carer within such a group, not only because I use carers Lewisham (which is a voluntary community service) but because who I care for also uses a lot of services.
The event also gave me a lot more opportunity not only to participate, but also to have fun in participating, plus to gain further insight into the problems of the National Health Service, which faces its greatest test ever since it was formed.
There is fear of the unknown that if such services are cut. A lot of people are worried the more things are privatized then value for money will be lost, community will be lost and quality of service would be at risk.
Not only is it vitally important Healthwatch runs such events, it is also important that the public give their views on the services they use. They do not have to always complain, the public can just make a statement or congratulate on a service.
I hope Healthwatch continues to do a vitally important role engaging and obtaining views from the community in future for the community.