Welcome to another carers blog from carer activist Matthew McKenzie. I blog and promote awareness campaigns, events and updates for unpaid carers. Just so you know, an unpaid carer is someone caring for a person who suffers from a serious mental or physical health need. An unpaid carer is not a care worker, so carers need their own specific support needs.
This leads on to an event I attended as one of the Cygnet carer network ambassodor. The event was another of the carers, families and friends network event. Cygnet try very hard to reach out to unpaid carers whose loved ones are using their services. It is a great way to network with staff and other carers. Carers go through many struggles and one of them is caring in isolation. So what I often tell carers is that they should network with other carers. This can help build up a support structure where carers can become peer supporters. Of course there are boundaries as carers do not often have the time to check in with other carers, but we still have to value the importance of a carer support network.
Cygnet Sheffield
Cygnet Hospital Sheffield offers a low secure service for women and CAMHS services for male and female adolescents over three distinct wards. When I mention CAMHS I am talking about Child and Adolescent Mental Health Services.
We cannot ignore that children and young people can also develop serious mental health problems and the outcome can be devastating for carers, friends and families.
Carers need all the information and support they can get. So it helps to have these events. The event took place on Carers Rights day, which is held on the 23rd of November each year. Please check out my earlier blog post on Carers Rights day to find out more.
Also presenting at the Sheffield Carers Network event were
Ali Curtis – CAMHS Service Lead for Cygnet Sheffield and CAMHS Lead Nurse for Cygnet
Dr Seb Thompson – Head of Psychology at Cygnet Sheffield and CAMHS Lead Psychologist for Cygnet
Lesley Mellor – Parent & Carer
Julian de Takats – Parent & Carer
Kate Mercer – Family Advocate, Black Belt Advocacy
Ali Curtis started off the event. Ali who is a qualified learning disability nurse started her career nursing within medium and low secure forensic services before progressing to management within locked rehabilitation and children’s community services.
She her presentation and introduction to the event on what the service provides for those who use Sheffield hospital services. Ali presentated on aspects of the Triangle of Care, which is a scheme to improve mental health services for unpaid carers.
Sheffield hospital has done an amazing amount of work to develop and improve carer engagement and support. This was done in co-production with unpaid carers. This includes
Developing a Carers Welcome Pack
Carer awareness training
Carers contributions and videos and podcasts
Communication Care Plans, including information sharing agreement
Family Forums and so much more.
The above was developed to connect to the triangle of care 6 standards.
Dr Seb also contributed to the presentation on how the triangle of care made improvements to severals. If we include the families and carers in our mental health services then the quality of the services improve.
We then had Lesley Mellor talk about her caring role and feeding back what she heard from Dr Seb and Ali Curtis.
Lesley is the chair of Dorset Parent Carer Council. She is also the founder and administrator of West Dorset Coping with Chaos Plat Scheme for children with disabilities / additional needs. Lesley is a parent of 2 sons with disabilities. Lesley gave a passionate and indepth talk about the importance of parent carers.
Next up to speak was myself where I wanted to get views from those in attendance regarding carer awareness. I read out one of the poems out of my carer poetry book focusing on the desperate need for carer identity. I also talked about the importance of Carers Rights day and how we can use the day to highlight carers rights.
Up next to present during Lunch time was Kate Mercer. She runs a training organization called Black Belt Advocacy that offers support and formal qualifications to independent advocates including a National Advocacy Conference each year.
Kate spoke about the importance of advocacy for carers and the impact advocacy has in their lives. With support of the Care Act and mental health laws, there has been an increase in carer rights, but this is no good if services are unaware of these rights and they must be practiced and promoted to carers.
Last to speak was the 3rd member of the Cygnet Carers Network Julian de Takats. Julian is also a parent carer and used his lived experience to present the importance of including carers.
Overall the event increased carer awareness for those in attendance. I will continue to urge carers attend such events so they get a chance to network, ask questions and learn about how Cygnet services are developing to include carers.
Welcome to a carer awareness blog from carer activist, author and poet Matthew McKenzie. The writing of this blog is on the 23rd of November, which means it is Carers Rights day 2023. This day is so important to carers because it is a chance for them to understand their rights if caring for someone unpaid.
Carer rights are important for many reasons, but if you are a carer providing care for someone going through mental or physical health needs. Why is it important to learn about your carer rights?
Learning about your rights make the journey easier
The title says it all. The point of learning about your rights is to learn what can make your journey easier as a carer. Lets be honest, caring is a valuble thing, a noble duty that one can pick up and be there for others. The sad thing is this journey will be a path where there are hills and mountains to climb.
This journey will have the carer coming to splits in the road, where if they take the wrong path or wrong decision it will affect them for the rest of their lives. So learning the signs, notices and signals on this journey can make the travel much easier.
These signs could be
Being identified as a carer Being valued for what you do Being listened to and having your concerns recorded Being offered information and advice about your caring role Access to a carers assessment Access to an advocate or access to a support group.
Here is a carer rights day awareness video that I have made. You can view below.
One of the best things a carer can experience is to be identified. When I mean identified, it would be identified from health and social care services. It means that if you get into trouble, then extra support kicks in earlier. Still, as a carer do not expect this to happen all the time. Carers have to know their rights and step forward to say to services “I am a carer”.
It is a shame that carers have to do this. It is a shame that sometimes services need to be reminded of their duty identify carers. So this is one of the many reasons to have a carers rights day.
Learning about your rights improves services
Everyone learns from each others journeys. It is the way of the world. If a carer has the most difficult path to travel then those who provide services will want to make improvements. Most people do not want carers to face challenges that are so difficult that it would put them off providing unpaid care. The way things stand now is that health and social care services will become more reliant on those caring in the community. The population is getting older and we are all living longer. So society now needs to understand the importance of providing unpaid care, because we now cannot expect services to always be there.
This means carers need to know their rights so they can feedback to services on what works for them. If carers sit there and cope then service providers will second guess what they think will work. This is unacceptable and this means little in co-production and design of health services.
Learning about your rights gives you power
Knowledge is a powerful thing. Information is not enough and we must put information into practice. This information can be powerful if applied at the correct time. It is no good being told your rights and not learning from about those rights.
Knowing where you stand can give you confidence in dealing with services. You know what to expect and if you do not get that quality service then you can remind services of your rights.
Final word
I do not expect Carers Rights day to magically solve the situations carers experience from their journeys. Health and social care services can forget to support carers. Such services might focus all their efforts on the patient and forget the carer. We can also note that people might not even notice they are providing care and will all to often ignore their rights.
This is why Carers Rights day occurs every year. It is an important day to remind ourselves that we all need to be aware of our rights because it make the journey easier for us all.
Welcome to another blog post by carer activist, poet and author Matthew McKenzie. Leading up to carers rights day, I have another exciting update. On 20th of November 2023, it was South London & Maudsley’s Family & Carers Listening event.
For those who have never attending such an event, I wrote a blog about South London & Maudsley’s previous carers conference.
South London & Maudsley provide the widest range of mental health services in the UK, but it is so important that behind mental health services are families and carers trying to cope and trying to make a difference. So it is important to listen to families and carers.
For those who dont already know, a carer is someone who who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without the carers support.
So what took place at the listening event?
Well after the introduction from Gabrielle Richards MBE who is the Head of Inclusion, Recovery and Professional Head of Occupational Therapy and AHPs. She was also joined by carers Faith Smith and Ann Morgan who helped co-produce the event.
This was a bold step by the mental health organisation to have carers design the event on what carers would want to celebrate.
The theme of the listening event for 2023 was “Looking after you & Listening to you”.
We then had a welcoming video from Sir Norman Lamb who is the chair of the NHS Trust. Norman Lamb mentioned that even though we have a carers event, there still is a long way to go to provide the best support for carers who do so much to support those using the mental health services in South London.
Sir Norman spoke about how SLaM worked so hard for the Triangle of Care scheme to archieve it’s first star for inpatient wards. The South London NHS trust is working towards their second star.
Carers Rights day section
We then moved onto the importance of Carers Rights day from Cath collins who is the Carers Social Worker for the borough of Lewisham. Cath spoke about the importance of carers rights and how families and carers play a key role in the recovery of people with mental health problems.
Cath mentioned the difficultly of stigma and shame around mental health where some carers do not wish to engage with services, but if they do not engage then they can miss out on carers rights. So with Carers Rights taking place on the 23rd of November, it is so important this gets highlighted.
Cath Collins also spoke about the particular strain carers from ethnic minorities face especially the impact of racism and trauma, which can filter down from barriers outside of the NHS. Cath Collins then spoke about planning for the future which was raised by Brenda who is a carer. Brenda was worried about what will happen to a loved one when they cannot care anymore. So learning from birmingham and solihull mental health trust, SLaM engaged with Brenda’s ideas and developed a Planning for the future and emergency planning document aimed at carers.
The last presentation from Cath was the importance of carers assessments
Laughter Workshop Session by Jaycee La Bouch (Zen Laughter)
Carers who planned the listening event wanted something to make them smile or laugh. So it was no surprise to see Jaycee La Bouche from Zen Laughter provide a Laughter Workshop.
Jaycee is a great carer ambassodor for Carers UK which is a national charity promoting carers rights and providing a platform for carers to be heard.
Taken from ZenLaughter website, They say “laughter is the best medicine”. This was quite true for the day as Jaycee took us through several activities of Laughter Yoga. I have never tried laughter Yoga, but after the session I can see the benefits. Carers go through such stressful and difficult circumstances. Carers can be easily worn out and worn down by struggling to provide care. So any form of wellbeing exercise is worth the investment.
Jo Lambert & Matthew McKenzie – Bridging the gap using poetry and artwork.
As a poet and author I often use the power of creativity to develop social change. Sometimes I am happy to just express myself with poetry. Carers can go through so much strain that at times words themselves cannot express the pain and torment. So poetry is a great medium to highlight the issue where other carers can just relate instantly.
There is power through poems and connecting. It does not have to be about pain. A lot of poems can have a happier outlook and be hopeful, but being realistic many carers find themselves in a role that is a struggle.
So Jo and myself are a part of a carer poetry circle to promotes the values of caring. Jo spoke about her lived experience of being a carer and using Art and poetry to bridge the gap. I spoke about the social focus where it is important to connect and network with each other. The caring role can be isolating and lonely. The focus for healthcare can be patient centred, but behind the patient often is the carer, silently coping and carrying on. I wanted to let carers know that they should not just cope, they should also connect with each other. Carers should share experiences, updates and focus on positive activism for a better change. Work with the health and social care services to bring about a better experience.
Jo and myself read the poem “Fairy lights of Hope”, which you can see from the video below.
Connecting, networking and food
Carers took my advice and networked with each other, with a plate of sandwiches and cakes. It makes it so much easier to network if you have food and drink.
The Ortus Learning centre provided excellent refreshments so carers felt at home and relaxed to catch up with each other. It was excellent to see old friends who are going through the journey of unpaid care. Carers also learned about what projects or campaigns they have been involved on.
After Lunch we moved on to another creative session from Annette Davis as she performed a series of songs to entertain the audience. I managed to record one of the songs before my phone ran out of power.
Advanced Choice Documents presentation
The next session was the importance of Advanced Choice documents. An advance choice document allows service users to have a say in how they wish to be treated during a future crisis or relapse, by making professionals aware of their advance wishes and preferences as requests and/or refusals of treatment
The presentation was presented by Kay Burton, Mental Health Law Project Manager, Pauline Edwards, Peer Recovery Trainer, Nick Hunter, Peer Recovery Trainer. The presentation was engaging as carers asked a series of questions about the challenges they face regarding the ACDs.
Rob Frowen carer impact discussion
The next part of the SLaM carers listening conference moved onto a talk by Rob Frowen who is an author. Rob also won the UK’s Carer of the Year award in 2017 for his caring and charitable efforts.
Rob Frowen talked about his caring journey and the impact it made across the UK. He also spoke about his book “The Long and Winding Road”. It is important carers tell their story otherwise no one will know or learn about the challenges carers face.
Rob still continues to share his insight and helps shapes policy at a high level through his local NHS trust “Lancashire and South Cumbria NHS Foundation”. It is encouraging to see the NHS trust have Rob on their board to raise and include the carer voice to a high level.
Poetry group workshop by Ann Morgan
This workshop focused on the power of poetry. Ann Morgan led a session for the audience to develop their own poetry by incorporating a single statement from each person and creating a set of poems.
I was amazed at the result as each poem developed from each table. The poems were creative and inspiring. South London & Maudsley will create a booklet featuring each of the 7 or so poems.
You can listen to one of the poems below
How carers can get more involved Session by Faith Smith
The final session was led by carer Faith Smith. Faith is involved at SLaM and also works at the Health Innovation Network. A video was presented on the importance of carer involvement. The video featured Faith Smith and Aurora Todisco (Lived Experience Partners) and Sophie Lowry, Implementation and Involvement manager HIN (Health Innovation Network).
The HIN connects NHS and academic organisations, local authorities, the third sector and industry, in order to increase the spread and adoption of innovation across large populations, at pace and scale.
It is so important that such organisations include the carer voice as carers need to be included on the journey of health and social care. The video led to brilliant discussions on the importance of carer involvement
National aim of NHS England, poetry and closing remarks.
Did I mentioned I am involved as a carer at NHS England? There are several aims from NHS England and one of them is focused on carers. NHS England have worked very hard to include carers despite the challenges the organisation faces.
I presented an overview NHS England’s framework for carers.
I asked carers that they must hold Integrated Care Systems to account as they must include carers from the framework presented. The challenge carers face will be difficult due to resources getting less. Still if carers want to be included then the need to be present, but specfic carer campaigners and activists cannot be everywhere so they must network and update each other.
Unfortunately I could not finish the presentation because the audience were very keen to find out how they could hold to account health system policies. In the end after closing the the SLaM carers listening conference. I felt the organisation was very inclusive to co-produce with carers and listen to the stories, concerns and challenges carers face.
Welcome back to another carer and mental health blog post for November. This blog focuses on Kings College hospital event for Tuesday 14th of November. The event was called “King’s Mental Health Fair”.
King’s College Hospital is a major teaching hospital and major trauma centre in Denmark Hill, Camberwell in the London Borough of Lambeth. Kings provide local hospital services for people living in the boroughs of Lambeth, Southwark, Lewisham, and Bromley.
However Kings college hospital feels not only physical health is important, but also mental health. Kings hospital also wants to work with community groups to help promote good health and mental wellbeing. So for 2023 it was the 2nd ever Mental Health Fair.
The mental health fair took place in the Boardroom which is in the Hambleden Wing, which ran from 11 am till 2 pm and hosted by Kieran Quirke who is the Associate Director of Nursing for Mental Health at Kings. The fair was open to all patients, staff and carers, which staff from Kings hospital attending and also staff from NHS maudsley dropping by.
There were some excellent stalls from organisations taking part. I visited a stall from the SHARP gallery where they mentioned exhibitions and workshops.
Age UK Lambeth had some very interesting handouts. Age UK Lambeth is an independent local charity working in Lambeth to offer support and services to older people.
I also checked a few things from the Kooth stall, which provides an anonymous site which helps children and young people to feel safe and confident in exploring their concerns and seeking professional support.
Then I spoke to Nathan who running the Lewisham, Greenwich and Southwark Samaritans stall. Samaritans is a registered charity aimed at providing emotional support to anyone in emotional distress, struggling to cope or at risk of suicide
The next stall I visited was from Southwark Healthwatch. Healthwatch Southwark are the independent champion for the patient and public voice. They bring people together to influence health and social care services in Southwark to make them better. Everything they say and do is informed by their engagement with local people. Their aim is to address inequalities in health and social care and ensure local services are appropriate for Southwark’s diverse communities.
I then spoke to familiar faces at Lambeth Carers Hub. The carers hub seek to limit the challenges that carers face. They achieve this through four core workstreams: raising awareness of carers, influencing local policy through community engagement activities, improving carer wellbeing and connecting carers to each other and to support and training opportunities through their services.
I was also privileged to be part of the mental health fair as I promoted information on unpaid carers these being info on Carers UK, plus I gave away some of the books I wrote on carer awareness for those caring for someone with a mental illness and promoted my group for the Southwark & Lambeth MH carers forum.
Other important stalls were on the Mind and Body programme where they are committed to join up and deliver excellent mental and physical healthcare, research and education so that they treat the whole person.
There were many other organisations and stalls, but overall I felt the event was great partnership working with the community as we all work together with the hospital to increase awareness, health and wellbeing for all.
Here is my first carer blog post for November. Come to think of it, November is an exciting month because it is not long until Carers Rights Day which takes place on the 23rd of November. It is important unpaid carers know their rights, but that is a blog post for another day. What I want to highlight in this post is something I have been doing for the past year. That is having a location in some hospitals to engage with carers wandering around the area.
Why do I feel it is so important to engage with carers at hospitals? I mean I can always link up with carers at support groups or carer centres. Well from lived experience, I know full well that hospital experience for carers can be a daunting experience. With health care as it stands, the focus is often on the patient. It is how we understand that the patient is in need, especially if their health is in crisis. The patient becomes the service user and thus they are the core focus of hospital services.
The carer or family member might possibly be in the background. Patiently waiting for their loved ones recovery, they want to follow that person through the hospital experience. Yet, there are probalems and challenges. Very few health professionals often engage with the carer, they might fail to identify them, not keep the family, friend or carer updated. Worst of all there might be scenarios where the carer is completely ignored even if the carer is pointing out options for better recovery or warning against something. There could be lack of carer advocacy, lack of carer referrial, lack of carer peer support especially when a loved one is nearing end of life.
Some people do not even know they are caring, they just arrive in hospital and listen to every advice the health professional provides. People experiencing the role of providing unpaid care might just end up coping in their role.
If carers go through all of the above and believe me a lot of carers experience this when they wander the wards of hospitals. Then it is not hard to understand that carers can feel under valued. Carers will feel they are not listened to if policies and plans are not in place to hear carers out. If carers feel they are not heard, then they will not want to engage with professionals. It is not like we want to force people to take the label of carers, but if they are not identified then how can the hospital system provide carers with the support they need.
With changes in the Health and Care Act, it is vital that hospitals work hard to engage with families and carers. Many carers taking their loved ones to hospital still go unidentified as hospital record systems are too slow to record carers. There has been great strides in the NHS to use the power of co-production to develop a carer’s discharge toolkit. Many NHS hospital trusts have taken the challenge to improve the experience of carers at hospitals. This provides a pathway to understanding carer needs and compiling data to find out the root causes of carer distress.
For far too long carers feel they are not understood or are not provided any service even though carers ARE actually using hospital services. Just because carers do not have a hospital bed, does not mean they are not vital in continuing care especially when the patient is discharged. The NHS faces immense challenges and will rely on the caring community as never before.
With the new carers hospital discharge toolkit, there is an excellent foundation to build upon to make carers included in the hospital experience. The NHS owes this to carers and we need to include, support and value the experience unpaid carers bring.
Welcome fellow carers. Here is the brief October update from my London cancer carer forum. The forum is aimed at those caring for someone with cancer, we welcome to hear experiences, connect and grow the network. The forum runs every last wednesday evening of the month.
Caring for someone should be identified and recognised, especially if you need support. Caring is part of the community and carers themselves should be part of that community.
So for our October meeting we were delighted to be joined by Anton Morgan-Thorne who is Macmillan Engagement Manager for London, Southeast and East of England.
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care.
Macmillan are developing a new strategy on engaging with the community. It is important that those caring for someone with cancer also have a say and be part of that community.
Andy talked about what Macmillan can offer those affected by cancer and how this can help cancer carers. Macmillan talked about welfare rights advisor, macmillan information centres and support that can help carers such as Holistic Needs Assessment of their loved one.
So it was great to also hear from Rachel Waddon who is Macmillan’s new communities’ manager. Rachel talked about the Macmillan London Cancer community. The LCC has been around for some years, but has not had anyone to support the community until now. Rachel is doing a survey with the London Cancer community members to get an understanding of what the members of the network would like from it so that they will co-designing it together. Rachel wants to develop a really strong foundation for the London Cancer Community to grow.
Our group will look to be part of this community to help provide a platform for carers to be heard and involved. This include feeding into policy, telling stories and helping to build a stronger foundation for carers to be included.
If you are caring for someone with cancer, feel free to check out Macmillan’s online carer forum.
A Caring Mind 