Author Archives: mmckenz11

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About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

Cygnet Wast Hill Regional Carers Network Event

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.

Exploring experiences of carers for someone with psychosis

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

Cancer Experience of Care Recognition Event – 2024

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”

The importance of Young Carers Action Day #YoungCarersActionDay

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.

How the Budget 2024 will affect carers

Media courtsey of BBC News

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

Budget for Long Term Growth

Carers Trust response to the Budget 2024

Carers UK response to the Budget 2024

Holly MacKay Boring Money website

Come election, I hope all carers do their bit to say who they want in power and also hold them to account.

Thanks for reading.

February Monthly Carer & Health News Updates 2024

Here is the latest carer and mental health news for February by carer activist and author Matthew McKenzie.

February 2024 Carer and Mental Health news <- Read more news items here.

For the February edition on unpaid caring and mental health we have the following news items.

Carer Videos

  1. Irish in Britian – Carers matter: Thoughtful Thursday
  2. The Carers Challenge 2023: Launched by ADASS President, Beverley Tarka
  3. Carers UK – Tips and guidance for carers on residential care
  4. Channel 4 – ‘Carers are just abandoned’: Demand for council respite care soars as funding squeezed

Latest Carer News

  1. Keep carers in work to save £6bn, Government urged
  2. Hospital discharge and community support latest guidance – DHSC
  3. Lindsey Burrow: Who Cares For Our Carers?
  4. Charities must be ready for delays, risks and ‘manufactured culture wars’ ahead of election
  5. Young carers don’t live in any particular postcode or come from any particular type of family – neither do poets
  6. Esports students at East Sussex college raise funds and awareness for local young carers
  7. Carers Week 2024 is ‘putting carers on the map’
  8. Dorset carers encouraged to get local discount card
  9. Making life better for Carers, how a Carers ID card can help

National Organisation updates

  1. Fair Futures For Young Carers: Young Carers Action Day 2024 Theme – Carers Trust
  2. A carer’s guide to preparedness – Mobilise
  3. Find your local Healthwatch – Healthwatch England
  4. About OneLondon – London Care Record data focus
  5. Social Prescribing Information Sheet for Local Carer Organisations
  6. Join Carers UK as a member
  7. Give feedback on care – CQC

Carer Research Papers

  1. Unpaid Care Policies in the UK policy briefing – Professor Liz Lloyd 
  2. Catching the threads: caregiving in Alzheimer’s disease – Elizabeth Kuipers
  3. A qualitative exploration of the barriers and enablers to supporting informal and familial carers within community pharmacies

AHPs news updates

  1. Swallowing Awareness Day 2024 – RCSLT
  2. Share your views on our Strategic Plan towards 2030 – Gosc
  3. Episode three of our Trauma series – College of Paramedics 
  4. Six allied health professions have come together to launch #PrescribingNow 
  5. Fluid (water and drinks) and hydration – BDA

Cancer Awareness updates

  1. UK cancer treatment falls behind other countries
  2. Ask the expert: Living with lymphoma
  3. Ultra-processed food raises risk of cancer and heart disease, review finds
  4. Factors Associated With Racial and Ethnic Disparities in Locally Advanced Rectal Cancer Outcomes

Opportunity for Lived Experience involvement – Oxehealth

Oxehealth is a health technology company focused on inpatient mental healthcare. Oxehealth is looking to extend their co production activities to bring together a wider range of voices from both patients and carers. They are planning to run both in person and online focus groups to deep dive on specific areas of product development. There may be further opportunities for participants to extend their initial involvement and join their core expert by experience group.

Who should attend? Welcome to both service users and carers with experience of inpatient mental health settings. Experience of Oxehealth vision based patient monitoring system is desirable but not essential.

What the sessions will cover? Focus group 1: Patient monitoring – privacy and choices Aim is to get feedback to help prioritise initiatives designed to enhance privacy, agency and choice for patients on inpatient wards when using vision based patient monitoring systems. Focus group 2: Developing sleep reports for patients and carers Aim is to get feedback on design and content for reports for patient and carers which provide information on how patients have slept.

Will I get paid for attendance? Yes, compensation will be paid at the rate of £30 per hour. Each session will last for 1.5 to 2 hours. Reasonable travel expenses for face to face attendance (with receipts provided will be compensated up to the value of £30

When will the meetings be held? We will hold 4 sessions with c 6 – 8 attendees each in March/April (2 on each focus group topic). The sessions will be c. 1.5 hours each and will be on weekdays either a morning or afternoon session. 2 sessions will be in person in central London; 2 sessions will be online on Microsoft Teams

What work will I have to do in advance of the session? Before each session, we will meet online with each prospective participant for 30 min to 1 hour meeting to provide an opportunity for participants to find out more about the technology and the company.

To express interest please contact Karen West – karen.west@oxehealth.com

Forensic Carers Conference 2024

Welcome to another quick blog by carer activist Matthew McKenzie. I run many carer groups aimed at those caring for someone with mental ill health, most of the groups are voluntary, but there are a few that are co-run with NHS trusts for partnership working and carer empowerment.

I do a lot of carer engagement at West London NHS trust and was delighted to participate in the Forensic Carers Conference held at Conway Hall. The conference was a showcase of what is happening for those who care for someone using Forensice services, it was also to allow carers to promote their lived experience and raise their profile. We also heard from various researchers both national and international.

The event was funded by North London Forensic Consortium. The North London Forensic Consortium consists of the following NHS trusts:

Barnet, Enfield & Haringey Mental Health NHS Trust
Central and North West London Foundation Trust
East London Foundation Trust
North East London Foundation Trust
West London Trust

The North London Forensic Consortium’s core aim was to reduce the number of people who were cared for out of area and create the services their population.

  • Forensic Carers Conference throughout the day

The conference was very well attended and was opened by David Cochrane who is Head of Forensic Social Work at West London NHS trust high secure unit being Broadmoor.

We then had opening remarks from Leanne McGee who is the Chief Operating Officer for High Secure & Forensic services. Next I read one of my carer poems from my book “The mental health carer poetry book”.

I spent a good 10 minutes getting feedback from the audience on what the poem could mean to them and why families and carers would be anxious of the mental health of their loved ones.

We then had a presentation from Dr Sara Rowart from the University of Ghent (Belgium). Dr Sara presentated on “Family perspectives in forensic care trajectories in Belgium”. This then led onto a discussion of learning and comparison of forensic services in the England.

After the coffee break, we heard from Dr Ruth Naughton-Doe (University of York). She and her team presented on “What Support is Provided to families of detained patients, what do families want and what are the challenges?”. We also got to watch a video on the work the team has done so far.

You can also view the research paper of the work in the link below.

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-024-05602-9

The Forensic Carers conference was useful for getting feedback from carers, professionals and researchers. So there were several feedback and discussion sessions.

We then heard from sibling link CiC who run peer support groups for adults; one for those who are caring for, affected by or worried about their sibling who is experiencing mental ill health. We heard from co-founders Tash Warburton and Bex King who both presented on “Sibling Link: Support through Connection”.

You can view their website from the link below.

Sibling Link

Next we had Raf speaking about expert by experience from Cygnet, unfortunately Laura Sheridan who oversees the Cygnet Carers Network was not able to be in attendance.

I help closed the event with a Joint poem from another Carer who attends my carer forensic group over at West London. My thoughts of the Forensic Carers event are that it was excellent and I am impressed they managed to make the event hybrid so others can join online to even contribute.

I will wait to see how the other NHS trusts promote their carer forensic events

Strengthening Cultural Sensitivity – Southern Health NHS / Touch Network

Are you a minority ethnic carer in the areas of Hampshire? Do you want to help improve mental health services for someone you are caring for? How about having your carer story being heard? It is your chance to help ‘Strengthening Cultural Sensitivity within Ethnically Diverse Carer Communities’.

It is time to be heard and also have an impact as a carer. Without your input as an ethnic minority carer then it is difficult for services to understand what is a priority for you. With the support of Touch Network CIC, Southern Health NHS trust wants to hear from you.

The next Carer Story meeting is on the 28th of February. If you are a carer whose loved one is using the services of Southern Health NHS Trust, please leave your contact details in the form or email hannah@touch.network.

Please see the poster below and get a chance to be heard and help set priorities.

We are all in this together and together we will strengthen our diverse communities.