Welcome to the April 2024 update of the London Cancer caregiver group. This is the only carer forum I run that focuses on a physical health illness, which is Cancer. The forum is carer led and provides a space and platform for carers to be heard and to find support.
This group runs on the last wednesday of the month as all other days at booked for the mental health carer groups. Since I am a volunteer with Macmillan Cancer Support and part of NHS England Cancer Improvement Collaborative, I often try to run the group to engage with cancer caregivers.
The group is smaller than my other mental health carer groups, but it has support from the Acute hospitals in London including Guys & St Thomas, Greenwich & Lewisham NHS trust, Kings College Hospital, University College London hospitals, Kingston Hospital, St Georges Univeristy hospital and more.
I am very grateful for the support of the NHS and Macmillan as we seek cancer caregiver empowerment.
April update of Cancer Carer forum
As usual I always welcome carers to connect at the start of the group. Most times I listen to carer feedback depending on their experiences. We welcome new and verteran carers.
The next session was on carer intevention. It is important families and carers are counted and supported, but also listened to.
So I was glad Gunn Grande, Emerita Professor of Palliative Care at the University of Manchester, plus Dr Gail Ewing from the University of Cambridge. The researchers presented on the “Carer Support Needs Assessment Tool Intervention” as known as CSNAT for short
Carers were interested in what interventions practitioners and health professionals can learn to support families and carers better. Sometimes the needs and support of carers are not always apparent.
Taken from the CSNAT website. “CSNAT-I is an intervention for supporting carers (family members/friends in an unpaid supportive role), delivered using a five-stage person-centred process of assessment and support. The intervention uses an evidence-based, comprehensive tool (the CSNAT) comprising 15 domains (broad areas of support need).”
Professor Gunn presented on why carer intervention is so important. She also asked if any of the following themes presented themselves when engaging with carers
Prof Gunn then described the 5 stages of the CSNAT tool, which the practictioner needs to go through with the caregiver.
Introduce CSNAT-I
Carer considers needs
Assessment conversation
Shared action plan
Shared review
The group got to ask quite a few questions on CSNAT and we were delighted that the researchers had time for caregivers.
If you are a health professional dealing with families and carers who care for someone with cancer, you can find more information off the website below.
Researcher Lewys Beames who is a PhD Student at the Institute of Psychiatry, Psychology & Neuroscience, King’s College London, is undertaking a research project looking at improving experiences for mental health service users on psychiatric inpatient wards.
Below is an invitation to a focus group for informal/ unpaid carers with experience of inpatient mental healthcare to discuss how service users should be supported after experiencing coercive practice.
They would particularly welcome:
People who also have experience of coercive practices such as, involuntary admission, physical restraint or forced medications,
and people from Black and racially minoritised groups and communities who we know are more often exposed to coercive practices in mental health services.
Some examples of the areas and topics the interview will cover are:
· Perspectives on possible different types of support that could be offered. · Views on how this support should be delivered. · Perspectives on how to use the current and developing research evidence to develop a support intervention for service users.
When will the focus group happen?
Service User Focus Group – 3rd May 2024, 10:00 – 12:00 Informal Carer Focus Group – 14th May 2024, 12:00 – 14:00
Interested in taking part?
Please get in touch with via the contact details below:
Welcome to another blog from carer activist Matthew McKenzie. As a Cygnet carer ambassador, I will usually blog updates of the carer events they do, especially the ones I participate in. I think it is important carers can learn what happens at those events, so they can try attend for future events.
Obviously Cygnet runs other events to promote mental wellbeing, learning experiences and engagement, but I tend to focus on carers, so most blogs will be on carer networking and events. There will be times where I report on other carer events from NHS trusts, which helps on engaging with partners and the caring community.
The event this blog focuses on is the Cygnet Hospital Maidstone event. That took place on the 20th of April 2024. The carer event was the first event I attended from my recent honours recognition ceremony that took place in London over at Tower Bridge, but I will blog about that one much later on.
Cygnet tries very hard to engage with families, friends and carers who loved ones are using their services. So Cygnet hospital Maidstone put on an excellent event to showcase what they do for unpaid carers. As mentioned the event was run on satuday to give carers a chance to attend, since during the week this might not be so easy due to work commitments.
Both Julian and myself was welcomed by the friendly Cygnet staff at the hospital, I checked out the hospital’s carers board and then we proceeded to the board room for the event, which was laid out with carer information, policies and advice.
It was not long before some carers and cygnet staff attended and soon the event was opened by Hospital General Manager Alison McCulloch.
Alison explained the proceedings for the day which was
A set of expert talks A chance to network with attendees Launch and then a tour of the facilites
Cygnet Maidstone is a very large hospital with several wards. They have their own Healthy dietician room, prayer room, A room to learn music and skills, recovery college. Plus they have an indoor physical exercise room and outdoor sports area. There was so many facilities I dont think I can remember them all, but I will explain more later on.
Going back to the “Expert talk” section of the event. The first speaker was Louisa Powell who is also a hospital manager. Lousia explained why she became a mental health nurse due to lived experince of a carer. She is still a carer, but juggles her work to do as much as she can for those going through mental ill health crisis. Louisa cares passionately about the profession and engaging with families and carers.
When then had an explaination of what Cygnet was doing for carers. This was presented by Julian De Takats who is a carer and cygnet carer ambassador. Julian talked about his lived experience as a carer and why it is so important carers know what their mental health service provider was doing for them and their loved ones using the services.
Julian explained the following
What is means to be a carer The importance of identifying carers Cygnets offer to carers being Handbooks, welcome packs, carer passport and consistant contact
Julian also touched on the Carers Trust standards called “The Triangle of Care”. This is something Cygnet has worked very hard to archieve as several cygnet hospitals have gained their first star acceditation
We then has a talk from an addictions expert and how carers can be supported. We were even taken to the addictions centre where he explained many of the resources that help patients come to terms with addictions.
The next presentation was on the Special Wellbeing Team and what they provide at the hospital. This includes healthy eating, physical activity, involvement in developing th care and treatment plan and more.
We next presentation was on consent to share and discharg planning for Patients and their carers. This was presented by Paula Tappenden who is the Head of social work and Safeguarding lead. She explained the process for patients being asked if they are happy to share information with their carers.
Paula also talked about patient rights and how carers can still be involved even if confidentiality becomes a difficult process. Use of best interest meetings can help carers become involved if the patient lacks capacity to involve loved ones. Paula also touched on the importance of the Care Act 2014, which carers should be aware of. The last part of the presentation was on discharge planning and how it should involved carers.
I then presented on carer empowerment and why I feel carers should not only be supported, but empowered to connect. I did not talk much about my carer story, but how people should be encouraged to network with the community and take wellbeing out of the hospital and into the community. Obviously my focus was on carers connecting with each other. Due to many of my carer groups, this is what I am known for. I do not mean carer support groups, but carers learning from each other and learning more about services.
As an author and campaigner, I have written many books to share the knowledge and help raise awareness of mental health carers. The mental health system is complex, under resourced and every changing. It is so important families and carers do not leave things to chance. They should not wait to be offered access to engagement groups and learn to use feedback to help change things. Carers should take every chance to join their local carers centre, national carer support e.g. Carers UK and Carers Trust, plus learn to hold to account especially cygnet hospitals, integrated care boards, local authority carer stategies and keeping an eye on government policies.
I read out 2 of my poems to promote the difficult challenging experience of the carer and the poem on carer networking. Sometimes carers are in such a desperate situation that things cannot be solved, they just want to be listened to and also connect. However the carer situation does not always have to be hopeless, with the use of activism then carers can become empowered and focus their energies for greater change
We then had a networking session, some lovely lunch and a tour of the facilities.
All in all, I enjoyed being a part of the event. As a carer it is empowering to help promote how services can support the family and carer. I expect there will be challenges, but we are all in this together to promote a caring community, with better health and wellbeing for all.
Thanks to the welcoming staff at Cygnet Maidstone hospital.
Latest research focus for carers who support someone suffering from breathlessness. Kings College London are keen to explore some of the issues carers can face when the person they care for is breathless. This can be a symptom for people with heart and lung problems, respiratory diseases and cancers. It can be quite stressful and frightening for carers especially if they haven’t had support or training on how to cope with this.
If interested please contact eleanor rochester – eleanor.rochester@kcl.ac.uk
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
A Caring Mind 