Welcome back to another blog post by carer activist and Carers UK volunteer Matthew McKenzie. This blog post is focused on the upcoming event aimed at black communities to address Parkinsons.
The event will be hosted by Parkinsons UK who fight hard to raise awareness of parkinsons and promote better treatment and services for those affected by Parkinsons disease.
Parkinsons disease does not discriminate, although parkinsons usually affect those at an older age, it can affect others from any age, race or social standing. Parkinsons is a devasting illness and can easily put a strain on families and whole communities. This includes those from the black community
To increase awareness of how Parkinsons can affect the black community, we must come together to learn and discuss what steps we can taken to reduce the impact of the disease. It is not only the impact on the person diagnosed with Parkinsons, but also the family and carer trying to improve quality of life.
Taken from Parkinsons UK website. Parkinson’s is a progressive neurological condition. This means that it causes problems in the brain and gets worse over time.
People with Parkinson’s don’t have enough of the chemical dopamine in their brain because some of the nerve cells that make it have stopped working. Around 153,000 people live with Parkinson’s in the UK. And it’s the fastest growing neurological condition in the world.
The event Parkinsons UK is running is called “Addressing Parkinsons with black communities” This will take place online for both Wednesday 8th May and also Saturday 11th of May from 12pm – 4 pm.
I am proud to take part for the event on the 11th of May where I will cover how Parkinsons can affect carers and what steps carers can take to reduce the impact.
April is approaching fast and if you have been eating all the chocolate easter eggs, then its time to get active. Luckily Carers UK a national charity that campaigns for carer recognition is running an event where carers can get active and reduce isolation.
Join Carers UK for a gentle stroll around Some of Southwark’s historical sights. See poster below.
Welcome back to an update of another carers event. This time my blog is on the Carers UK members’ conference for 2024. The carers event took place on the 19th of March 2024 and was held at Woburn House over at Tavistock Square.
The event was sponsored by Regina Blitz, which will continue to support Carers UK’s Care for a Cuppa online sessions
This event is always something that I am looking forward to. Just for those who do not know. Carers UK is a national charity that supports and fights for carer’s rights.
Caring for someone unpaid although is a rewarding experience can also come with many challenges. If you are caring full time, then it is hard to pay your way on other costs, which could be bills, food, travel or even equipment to help provide care. The more difficult the condition of someone you are caring for, the more strain the carer will take on and this leads on to the importance of organisations that lobby for change and raise carer awareness.
At this particular conference we carers who have joined as a member to Carers UK and want to hear what the charity is doing for carers. Such events are recommended to attend because you can network, learn of updates and get a chance to ask questions or state your views.
The Carers UK members conference was also hosted online since there are carers who are too far or were caring and could not travel.
As I arrived at the venue, I could hear classical music and noticed that Orchestra Vitae was playing at the main hall. I felt relaxed and welcomed by the Carers UK staff who greeted everyone and also asked about how my travel to the venue turned out. I had a lovely breakfast at the start of the event and talked to a few people at the Carers UK stands. I spoke to representatives of Carers Scotland, Carers Wales and Carers Ireland.
It was not long before I spoke to carers from my own area where I voluntarly run my carer groups. It was great to spend time with those who understand the caring role. I also met many of the Carers UK staff who were also looking forward to the day. Everyone was relaxed and among friends and comrades.
We heard from many speakers including
• Nick Baird, Chair, Carers UK • Helen Walker, Chief Executive, Carers UK • Emily Kenway • Emily Holzhausen OBE, Director of Policy and Public Affairs, Carers UK • Claire Morgan, Director of Carers Wales, Carers UK • Richard Meade, Director of Carers Scotland and Carers NI, Carers UK
There were many highlights of the conference, especially the importance of carers recognising they do have the power to change things, especially with the election coming up. It is so important carers hold MPs to account on what they are doing to help unpaid carers have a better future.
Another highlight was the carers panel where we heard from carers experiences and the impact of the caring role. The panel was led by Emily Kenway who is an author of many books who also researches, writes and speaks about thought-provoking social issues.
After a lovely lunch there were breakout sessions which carers could choose to attend. The following sessions are listed below.
Membership and Support Carers UK offers
Implications of Carers Leave Act 2023 for Working Carers
Positive Poetry
Cartoon Drawing
Looking after yourself
I attended the membership and support for Carers session as being a member, I am often interested in updates provided. We got to hear of the latest initiatives, available online groups and issues affecting carers. We also got to hear from carer member Hitesh Daudia who also is a carer activist and has an excellent website aimed at providing information resources for carers.
I also had a spot at the conference due to being a long standing member of Carers UK since 2013. My role at Carers UK as a volunteer has grown as my profile raising carer awareness has grown. With Michael Shann who is Head of Carers support at Carers UK, I spoke to the audience of the importance of growing the carers network. It is vital that we all work towards growing the carers movement. This could be through sharing our stories, speaking to leaders who have the power to shape our lives, raising awareness or engaging with other carers.
The Conference finished with several songs from Matt Hill who is a accomplished singer songwriter. Matt sung songs that promoted the difficulties carers face. I felt the songs brought carers together as they all recognised the common struggles and felt this event was a place of belonging.
Through our lived experience, it is so important carers are included in the political agenda. We all must work together for a better future for unpaid carers and this can be done through Carers UK.
If you want to be a member of Carers UK one of the biggest national charities fighting for the carer cause, please check out the link below. You can also volunteer at Carers UK in a role that suits your caring situation.
A brief update of a recent Cygnet Carers, families and friends network event. As a Cygnet carers network ambassador. I often try to engage with families and carers whose loved ones use the services of Cygnet. For those who do not already know, Cygnet Health Care is an independent provider of health and social care services for young people and adults with mental health needs, acquired brain injuries, eating disorders, autism and learning disabilities within the UK.
Cygnet aims to connect to families and carers through there carer network events, triangle of care guidelines and carer offers through strategies and policies.
The carer network event took place at Cygnet Wast Hills over in Birmingham. Cygnet Wast Hills provides support for 21 individuals with autism, learning disabilities and complex needs. The team can also support individuals who may be detained under the Mental Health Act, as well as those who have complex behaviours, or who have significant difficulties with social engagement.
As you can see Cygnet provides the best service it can for patients, but there needs to be a focus on families and friends who are providing unpaid care. So I was glad to play my part in networking with cygnet friends and families.
The journey to the cygnet site although long was pleasant as I enjoyed watching the scenary while travelling. I met up with fellow cygnet carer ambassodor Julian de Takets as we discussed what to present for the event. With great support from Laura who is Cygnet’s carer lead and service improvement manager, I felt we would make an excellent impression for the carers who attended.
The team at Cygnet Wast Hill provided the best decorated experience I have seen for a very long time. They showed their dedication to the carer network event, I am very proud of them and I am sure many carers who attended were also impressed.
I was also happy to see carer information and updates on the service boards around the hospital site.
To open the event was a great experience as I read some of my poems in order for carers to relate to the caring experience. I asked questions at the carers and staff to help raise the awareness of carers.
We then had a presentation from Philip Winterbottom who is Head of Safeguarding at Cygnet Health Care Phil has worked as a nurse and manager for 20 years in various mental health and social care settings. In the last few years, Phil has held dedicated safeguarding roles on a national level.
Next was the networking with carers as we stopped the presentations for lunch. It was great to hear carers feedback and share experiences.
Next up was Kate Mercer who runs a training organisation, ‘Black Belt Advocacy’ that offers support and formal qualifications to independent advocates including a National Advocacy Conference each year. She also acts as a family advocate at Cygnet, supporting families who have a loved one in mental health settings. It is always a welcome sight to see Kate present as many in the audience finds her entertaining.
We then heard from the Occupational therapists Heather Davis & Tracy Lambert. Carers wanted to know what occupational therapists do and how they can support families and carers.
Last but not least to present was Julian De Takats who now has a focus on the triangle of care and setting up carer network events. Julian presented his carer experience and the impact it has had on him over the years. Julian feels the experience provides him the tools to help cygnet reach other carers.
Latest blog post by Matthew McKenzie on this exciting new research study from Molly Heeger who is a Trainee Clinical Psychologist from the Salomons Institute for Applied Psychology.
She is recruiting for her research project exploring family members experiences of supporting someone with psychosis. If you are caring for someone suffering from psychosis and would like to be involved in the study, please see poster below.
You can contact Molly through the following email : mh1216@canterbury.ac.uk
Welcome to another blog post from carer activist Matthew McKenzie. Did you know I am a stakeholder member of NHS England’s “Cancer Improvement Collaborative (CiC)” cohort 5? We had our Cancer Experience of Care Improvement Collaborative event, which was held over at Coin Street Neighbourhood Centre on the 5th of March.
The event was to recognise the work carried out by participants who were part of the cohort, these being the Cancer Alliances in England.
CiC Cohort 5 focus is on improving experience of cancer care for patients with a pre-existing condition (mental health, learning disability, autism and dementia) and their families and unpaid carers.
As a carer of lived experience, I was included in welcoming attendees and helping to promote the event. The recognition event was well attended and facilities were excellent. To start off with the event, we had a welcome Carl Shaw (Learning Disability & Autism Adviser NHS England) and Anna Rarity (Cancer Experience of Care Programme Manager of the National Cancer Programme) gave an Introduction to the Cancer Improvement Collaborative, which was easy to follow.
We were provided with a welcome pack which included the agenda for the day, which also included the commonly used Acronyms of the cancer programme.
We then had an introduction of the National Cancer Programme from Jodie Moffat who is the Deputy Director, Policy and Strategy of the NHS Cancer Programme.
Throughout the day there were several Project team presentations from the following
South East London Cancer Alliance East Midlands Cancer Alliance Humber & North Yorkshire Cancer Alliance March Primary Care Network Birmingham & Solihull ICB Blackpool Teaching hospitals North East & North Cumbria Bristol, North Somerset & South Gloucestershire ICB Coventry & Warwickshire
Highlights of the event was watching the carer story to show NHS England’s commitment to carers. Since I focus on unpaid carers, it was good to hear the impact of caring and how the carer managed their role as a cancer caregiver.
Another highlight was on recognising the archievements of Claire Marshall (Experience of Care Lead, Experience & Partnerships Team, People & Communities at NHS England) as she is moving on to another role.
I noticed some of the presentations allowed those with a learning disability or mental health to co-present and be part of the recognition. As the focus should allow those who use the services to co-produce and co-present the successes.
There was also a chance to network with others at the event during Lunch. I noticed some attendees were given different coloured badges to show if they were ok to chat or socialise. We cannot assume everyone is in the best mood to talk as they could be going through painful and stigmatising experiences.
The lunch provided was very good, which included vegan food. I also caught up with a few attendees and representatives from cancer alliances.
There was also a special presentation from the Quality Improvement Team from Great Ormond Street Hospital – Caitlin McGovern and Nuwanthi Yapa Mahathanthila. They presented on how Quality improvement proceeded at the hospital
The last update was from Dr Neil Churchill OBE who is the director for people and communities at NHS England. Neil spoke about the importance of the Cancer Improvement programme, raising awareness and including people’s experiences.
All in all, I found the CiC Recognition event an important way to update those involved in cancer improvement. It is important we include those who go though lived experience of cancer, but especially include those who take that extra step to use their experience to improve cancer care. That being both patient and those providing care.
I would also like to say “Well done” to Marsh Primary Care Network – Kent and Medway on winning the Great Idea Award for their project “Improving Cancer Awareness for Care Home Staff”
Welcome fellow unpaid carers and carer activists. Did you know at the time of this blog post that it is Young Carers Action Day 2024?
Young Carers Action Day or YCAD 2024 takes place on the 13th of March each year. The carers awareness day is lead by Carers Trust and supported by many organisations across the country
The purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs.
The theme for Young Carers Action Day 2024 is ‘Make Time for Young Carers‘. The theme looks at fair futures for young carers which will be focussing on why caring should not be a barrier to learning.
It is not good news if you are a young carer. Stats say that 1 in 3 young carers struggle to balance caring with our education, this can have a big impact on whether they can get on at school, go to university, or get a job or an apprenticeship.
The impact on young carers can be tremendous. If someone is providing unpaid care, they will struggle to do schoolwork and even when at school the young carer will be tired. All this will impact on the carers school performance, which will have a knock on affect for further education.
It is not just about education, young carers can be isolated and stigmatised, especially if caring for someone with mental illness. Young carers are often bullied and excluded, by only doing what is expected of a caring community.
So what can you do to help make a difference for Young Carers Action Day?
Tips
You can raise awareness by using social media, just like my blog post.
As a carer activist you can appeal to the UK Government for more help to be given to young carers.
Network partners of Carers Trust can get a resource pack promoting YCAD
Schools should listen to carer centres on best practice in identifying and supporting young carers, offering free tools and resources
Young carers, make yourselves known to us, as well as your school/college, employer and your GP.
Every young carer should have the chance to develop their own futures. Young Carers Action Day aims to create a future where young carers do not have to struggle so much.
Here is the latest blog for the month of March. Did you know that on the 6th if March, the Chancellor Jeremy Hunt announced the budget for spring 2024? As a carer, you might not think the budget is important. You might think numbers, figures and percentages are not worth paying attention to. As a carer you might not want to be bothered with political parties, but as a carer activist I feel we must hear the government and hold them to account on their policies.
I was fortunate enough to present my circumstances as a carer on the BBC news. I wanted to know how the budget would affect my caring role. BBC news also interview Holly Mackay who is the Founder and CEO of Boring Money, plus we had Joanne who also wanted to know how the budget affected her situation when trying to buy property.
Holly Mackay gave her thoughts on what she felt would be included in the spring budget. I also wondered how the Budget 2024 would affect my situation as a working carer. There was not a lot of expectation due to the downturn in the economy, but we all waiting with anticipation. Since I engage with carers through my carer groups, I asked how can carers prepare themselves if their situation became worse. Holly Mackay gave some excellent advice.
Holly Mackey – CEO of Boring Money
You can see the first part of the interview below.
After the budget was presented by the Chancellor Jeremy Hunt. Holly gave an excellent breakdown on how the budget will affect those who are vulnerable. I felt that the “Household Support Fund” being extend was great news for those struggling with energy bills, but many were stating it was a short term fix. I also was hoping for an increase in universal credit for both my brothers. Holly mentioned there will be an increase from £368.74 to £393.45 per month, which is good news.
Still, there was no mention of carers allowance in the budget, plus others would like a National Carers Strategy to transform Government’s approach to support unpaid carers. Holly mentioned there is some support for those who provide care and also work, but it might not be enough to make a big difference.
You can watch Part 2 of the interview in the video below.
Again, as a carer you might think the Budget 2024 is boring and not worth paying attention to. As a carer you might think the news on the government is not worth the time. As a carer you probably might think your MP is not interested about carers. I say that it is incredibly important to hold the government to account on the plight of carers. We are lucky to have a government system where we have the power to vote who we feel serves us best.
You can find out more about the budget in the link below
A Caring Mind 