Author Archives: mmckenz11

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.

Being part of something as a carer

Welcome fellow carers. Here is another blog post from Carer Activist Matthew McKenzie. This blog post is on the importance of being heard. If you have been caring for someone unpaid for a long time, you know what I mean by trying to get your voice heard.

I am sure you would have experienced the struggles of the person you are caring for. It might be their physical health or mental health or most likely both. It would have been so difficult to see your cared for’s quality of life suffer. You want to make that difference and you want the person you are caring for to improve. So you take up the role of unpaid carer.

It is not an easy role, you would have been through countless of hospital and doctors appointments. You might have gone through the tricky dialogue of communicating with the health professional to get a better outcome. There will be times that you have to take time off work to provide care. If you are not working then there would be challenges to meet bills and payments. This all adds up to mental and physical exhaustion and you wonder to yourself does anyone pay attention to what you are doing?

You are only trying to be there for your family, just like any other family. You know that the health & social care system is struggling, but if you do your bit then the cared for would not have to rely on the NHS.

Still; you have begun to realise that caring is not enough. You have been through so much for far too long and you want to be heard. You have been through such a long road, something has got to count. There must be others out there who have been through the caring role and would have knowledge to share. It has taken sleepless nights, constant anxiety, backbreaking work and feeling guilty from lashing out because you feel you have not been included.

The good news to all of this is that there are ways to be noticed as a carer. The difficult news is that you must take the steps to be heard. It is so important to be identified as a carer, even caring is not enough, it is so important for carers to be heard and to be taken seriously. I am not saying that there is something that can solve all the challenges that carers face. We need to be practical where we can work towards a better day for many carers.

As carers it is important to join a group that fights hard for carers. It is important to link up with other carers who can exchange ideas and also listen to you. A bigger group helps carry the load that each carer faces. Just by chance, the national charity CarersUK are running a campaign to recruit more carer voices.

This means you could become a member of carers UK for a more powerful way to be heard. Carers UK has many resources to help carers understand their role. It also helps that Carers UK understands that caring can be a difficult role and that they have campaigned for policies to make life easier for carers.

So if you want to counted, included and heard then take that step forward. Click on the following link and be part of something that will not give you a voice. but a way to be included.

Life does not have to be so hard because you care

https://www.carersuk.org/get-involved/join-us/become-a-free-member

Engaging people with severe mental illness with health research in Kent’

Researchers from the Centre for Health Service Studies at the University of Kent are working on a new project. They are currently working on a project around ‘Engaging people with severe mental illness with health research in Kent’. The goal of the project is to understand the experiences (if any) that people with a mental illness have with health research in Kent.

They hope to engage with people with mental illness and/or their carers, significant others, key stakeholders or those who have experience working with people severe mental illness. Researchers will collect information through interviews and focus groups in order to understand the ways of enhancing involvement and participation of those with a mental illness in health research.

If you are a carer of someone who has serious mental ill health, you can contact engagementalhealth@kent.ac.uk for more details.

London cancer caregiver forum – January 2024 update

Here is the brief update of my London Cancer caregiver forum. This is the only group I run aimed at those caring for someone with a physical illness. Cancer can strike at any time and it not only affects the patient, but also the family, friend or unpaid carer.

The London Cancer carer forum gets support from Macmillan Cancer Support and also the hospitals in London. A number of the hospitals have been helpful to advertise a carer led community group, which I run voluntarly.

Lewisham and Greenwich NHS Trust

Macmillan Cancer Support

Kingston Hospital

The speakers for the January London Cancer caregiver group were as follows.

Rachel Waddon – Macmillian community updates
Professor Sue Later – Supporting carers to manage pain medication in cancer patients
Caitlin Spooner RN – How does receiving a survival estimate affect the general health and wellbeing of people living with terminal cancer and their carers

Rachel from Macmillian Cancer Support presents

Rachel Waddon who is the new Macmillian Communities Manager for London and South East Regions has been very supportive for community groups. Rachel has provided engagement support and also helped support my cancer carer stall for front line engagement.

With the cancer carergiver network developing, it was great to have Rachel engage with the group. Rachel provided and summary of Macmillians Cancer Support services.

She took the group through the following support and information services.

Macmillan Website and Online Community
Macmillan Support Line (Nurses and Advisers)
Email campaign
Volunteer Services
Information from professionals
Information Centres
Wellbeing Coaches

Rachel also spoke about the impact of Money and Work when someone develops cancer, she mentioned what support is provided and also included the importance of Care Planning and Navigation, End of Life Care and Emotional and Practical support.

Rachel talked about Why there is a need to evolve Macmillan and how people will not settle for anything other than the best possible support for people living with cancer. As a charity, they can’t afford to stand still. Now more than ever, Macmillian need to evolve, taking every chance to make a difference.

If you are someone in London or the South-East of England who is living with or whose life is affected by cancer then please consider joining the Macmillan London Cancer Community. You’ll have opportunities to feed into cancer support services if you would like to and receive updates on information and cancer support in your local area. Join the Macmillan Cancer Networks.

Professor Sue Later from University of Southampton presents

There are lots of research into the experiences of patients, but did you know there is research which involves the experiences of those caring for someone with cancer?

Prof Sue Later presented her paper on “A community nurse-led intervention to support carers to manage pain medication in cancer patients at end of life” She spoke about what was known about unpaid carers.

Carers Play an important role in managing patients’ pain medicines at end of life.
Evidence suggests carers have concerns about pain medicines, and they feel they lack information and support.
Structured support for carers have not been adequately developed or tested for effectiveness.

Professor Sue paper presents what supports carers in managing medications at the end of life. The paper looks to raise the importance of intervention, which is acceptable, feasible and beneficial for patients and their carers. There is also identification of aspects of research design that could be tried on a larger scale.

The context of the paper looked at

How pain affects most people at end of life and can be severe for some.
Many patients at end of life report their preferred place of care.
Unpaid carers can be critical to medicines management and help patients to stay at home. This is done through knowledge and skills, monitoring and interpreting symptoms and also selecting, administering medicines effectiveness.

Prof Sue presented the objective of the research, which also led to a pathway of Cancer carer’s Medicines Management (CCMM) that is aimed at nurses.

Consent: Explain purpose, your role and consent from patient to discuss pain management with carer.
Assess: Explore beliefs & previous experiences, assess support and prioritise skills needs.
Review: Prescribe and review medicines chart
Education: Provide coaching for educational and information
Review: Make plans for review and provide resources
Support: Naming of what has been learnt.

All in all, the purpose was to equip carers to support their loved ones at end of life.

Caitlin Spooner RN from University College London (Marie Curie Palliative Care Research Department) Presents

The next presenter to speak was Caitlin on the impact of diagnosis when someone is told how long to end of life. This is called Prognostication. Caitlin wanted to measure the outcomes and develop standards.

She also wanted to compare other studies, but also wanted to involve patients and their caregivers and what was important to them. When comparing previous studies, this had to be done through online databases. Caitlin used 5 online databases that included

Patients with advanced cancer or those caring for someone with advanced cancer
Different definitions of Prognostication “Estimating length of survival”
Quantitive studies reported outcomes of prognostication

From searching the online databases Caitlin extracted the following outcomes and grouped into 5 key areas.

Death
Physiological/clinical outcomes
Life Impact
Resource use
Adverse events

Through a systematic review the most common outcomes of prognostication were

Treatment preferences
prognostic awareness
Quality of life
Depression.

It is important to note diagnosis of cancer especially length of survival not only affects the patient, but those supporting the patient especially the carer. It is important to note the impact of diagnosis on the carer.

South West London Mental Health carers January 2024 update

Welcome to the first SW London Mental Health carers forum for the year 2024. This group is aimed at those caring for someone with mental ill health within SW London. The group aligns itself with the same areas the mental health trust South West London & St George’s covers.

Our members are from the boroughs of Merton, Sutton, Kingston, Richmond and Wandsworth. The carers forum is co-facilitated by Ava who is also a carer. Ava focuses on the carer peer aspect in the group. She is also a strong member of the Kingston Carers Network and on involvement at SWLSTG.

The speaker requested by the SW London MH carers group was Stamatia Filippou. Stamatia is the Wellbeing Practitioner of the Wellbeing Team, NHS Merton Talking Therapies. She is based at SWLSTG. Members wanted to hear what services were provided by Merton Uplift.

Merton Uplift Presentation

Stamatia talked about the following.

On how NHS Merton Talking Therapies is a free service for anyone in Merton who has a mental health or wellbeing need, whether this is due to emotional difficulties or life stressors (low mood, feeling stressed or worried, stressful family situations, financial worries, parents who are worried about their children or feeling overwhelmed, life changing events).
The service is accessible to anyone living in the borough of Merton or registered with a Merton GP who are 18 years and over.

Stamatia also mentioned that they are an integrated service which consists of the following teams; Talking Therapies: Offering a range of psychological therapies, CBT (cognitive-behavioural therapy), IPT (interpersonal therapy), EMDR (eye movement desensitisation and reprocessing), Mindfulness based therapies, online, over the phone or face-to-face, self-guided, in groups or one-to-one.

There is also support for Wellbeing, where this helps individuals connect and access activities and resources to meet their physical, social and emotional needs. Their outreach work focuses on engaging with individuals who have historically not fully accessed talking therapies. Merton Uplift run a variety of wellbeing workshops e.g., Coping with Stress, Food and Mood, Living Well with Chronic Pain, Managing Anger, Managing Sleep, Self-care and Relaxation, Understanding Anxiety, Reaching your potential, Work, stress and burnout plus Wellbeing for carers.

After the presentation, there was a Q & A session where carers can feedback or query what was on offer.

For Talking Therapies referrals:
Phone: 020 3513 5888
Referral Email: mertonupliftreferrals@swlstg.nhs.uk
Via the website: Referral Form (mayden.co.uk)
The service’s admin team will register your referral and book you in for an assessment.

For Wellbeing workshop referrals:
Wellbeing Email: MertonWellbeing@swlstg.nhs.uk
Book directly on Eventbrite: https://mertonuplift.eventbrite.co.uk

Greenwich Mental Health carers forum update January 2024

Welcome to a brief update of my Greenwich MH carers forum. Like all my other groups apart from the London cancer carer forum, the Greenwich forum provides a platform for carers supporting someone with mental ill health.

The group seeks engagement from the mental health trust Oxleas, healthwatch Greenwich, social care, local authority and health services. It is important that unpaid carers are heard, included and involved regarding services.

For the January forum, we were joined by Healthwatch Greenwich on their update on the focus of including carer feedback about services.

The second set of speakers were Britt makhetshemu and Ana Stojanovic (South East London Mind) on the development of the new Greenwich Mental Health Hub.

We were also joined by Sue Sauter who is the Lead governor for Oxleas NHS trust.

Healthwatch Greenwich updates

Nakkita has a focus on topics such as Poverty, Vulnerability and Community Activism. Her interests are in how rights are upheld, especially during times of crisis and amplifying the voices of those most marginalised. She is passionate about giving back to the community she has grown up in and the services she has used, as a carer.

Nakkita De Silva who is the Admin & Project Assistant at Healthwatch Greenwich updated on the research project about improving services for adult ethnic minority carers in Greenwich.

Greenwich Mental Health Hub Presentation.

Next to present to carers and Greenwich carers was the development of the Greenwich Mental Health Hub. This is a partnership between South East Mind, Oxleas NHS and Bridge Support.

It was noted that the is a strong case for for Community Mental Health Transformation, because of the following.

Fragmentation and Transition Between Services
Thresholds and Barriers to Access
Challenges in Getting High Quality Care
Distance from Community

The Greenwich MH hub has a strong vision to develop:-

Personalised support. Where their commitment is to provide a diverse and personalised range of support for people facing mental health challenges within the community, addressing their psychological, physical, and social needs.

Crisis prevention. Their approach is to enable earlier support, foster recovery and staying well, and prevent the escalation of mental health issues that could lead to crises.

Making care fairer. The Greenwich MH hub are dedicated to reducing inequalities in access and experience of mental health care for all adult residents of Greenwich, regardless of where they live or their background.

A lot of time was presented on what the Greenwich Hubs core model is looking like

It was presentated that people should be able to transition seamlessly between different types of help, care and support as their presenting needs change on their recovery journey from ‘thriving’ and ‘getting advice’ to ‘getting risk support’.

Presenters Britt makhetshemu and Ana Stojanovic also talked about the pathways people have to access inteventions at the Greenwich hub.

Oxleas Lead governor Sue Sauter engages with the carer forum

Did you know a lot of mental health trusts have governors hold to account their board? Governors are usually voted in by the public, patients, carers and staff. It was excellent to see the lead governor Sue Sauter.

Sue worked at the NHS for over 40 years as a Registered Midwife in both a clinical, managerial and supervisory capacity. During this period, she was also employed by the Nursing & Midwifery Council and was a member and latterly, a Chair of their Professional Conduct Panels.

Sue talked about the roles of a governor, where one of the roles is to ensure the voice of our members, the public, patients and staff is used to inform our trust’s decisions and improve medical care and patient experience.

Since governors are voted into the role, it helps that they can hear from community groups. Sue was kind enough to take views back from our group and feed this through their council of governors.

This concludes a brief update of the Greenwich MH carers forum.

Ethnic mental health Carer Forum Update January 2024

Welcome to a brief update of my ethnic mental health carers forum. This is the January 2024 update where the forum focused on updates from mental health NHS trusts. The update was specifically on the new equalities initiative from NHS England, which is the Patient Carer Race Equality Framework. (click on picture below to zoom in)

As of 2024 the mandatory framework will support NHS trusts and providers on their journeys to becoming actively anti-racist organisations by ensuring that they are responsible for co-producing and implementing concrete actions to reduce racial inequalities within their services

Usually for my ethnic mental health carers group, I focus on things outside PCREF, but since PCREF has a heavy focus on minority voices, my group looks to engage with NHS trusts and their PCREF ambassodors on updates. A special note is the group is interested on how minority carers are being identified and included.

I am aware many NHS mental health trusts learn from each other so for the January group we had the following attend and present

As usual I brought in a special guest speaker from Middlesex University to speak about the following topic which she published in The Practising Midwife for the 2023 edition in November. Kristina spoke about “Mental Health Context for Minoritised Ethnic Individuals” and was specifically interested in why Perinatal birthing minoritised ethnic women and people suffer from poorer outcomes. Just to note, Krishna is not a mental health nurse, but a nurse under midwifery at University College London Hospital. She also teaches Midwifery at Middlesex University.

NELFT PCREF Presentation

Before we move onto Kristina’s presentation, the ethnic carer forum opened with a presentation from Asia Zaman who is the Transformation Project Manager for PCREF at North East London NHS FT. She was joined by Tarek Seeraullee who is the Havering Carers Lead at NELFT.

NELFT NHS has taken strong steps to not only incorporate PCREF, but also align it towards the hospitals carers strategy. The NHS trust presented that they admit their patients and carers have poorer outcomes, but things will improve through the following drives and more.

Upcoming workshops and events (increase cultural awareness) – carer led, to understand further about needs, perspectives etc.
increase Staff Knowledge and Awareness) – Develop workshops carer led, to share knowledge and awareness.
Increase Partnership Working – Task and Finish group- carer led, Havering best practice example? NELFT to consider aspects across all directorates.
Co-production – Carers group NCV-NELFT CarersVoice has been set up andrunning, for adults and young people.Workstreams in progress.

Presentated was 10 PCREF competencies where the carers strategy was aligned. We then had a Q&A session from attendees some carers were also from NELF.

SWLSTG PCREF Presentation

It was kind for South West London & St George to attend and present their focus on PCREF. This section was presented by Tom Carter who is the Peer Involvement Coordinator, Involvement Team. I know SWLSTG NHS trust fairly well as I have been hosting a carers peer forum for 4 years. My carers group in SW london covers the same areas as the MH trusts being Sutton, Merton, Richmond, Wandsworth and Kingston.

Tom presented the focus for PCREF at the NHS organisation, however we did have a few attendees from the area interested in the focus on ethnic minority carers. This is because they saw the presentation from NELFT and did not wanted to be left out. There was specific interest from Wandsworth carers centre and a few others.

On a side note, the mental health trust has developed a new induction video, which you might want to view below.

Kristina Goh presents on Mental Health Context for Minoritised Ethnic Individuals

As mentioned earlier, I was joined by Kristina to talk about her publication on why minorities groups giving birth had poorer outcomes. The group cannot always restrict itself to mental health NHS services as the equality challenge is presented in all other health sectors include acute services.

Kristina presented that one of the leading causes of maternal death antenatally and postpartum is mental ill health (10-20% of women).

Kristina mentioned that poorer outcomes could be challenged with the following.

Cultural competency training for healthcare professionals
Cultural competency vs cultural humility
Workforce needs to be reflective of the population we care for- think outreach, retention, development opportunities
Non-pharmaceutical interventions

You can view Kristina’s article from the following site. https://www.all4maternity.com/mental-health-context-for-minoritised-ethnic-individuals/

Kent & Medway Primary NHS Trust presents on PCREF

I have been involved at Kent & Medway for a long time and sit on their triangle of care steering group (see below).

https://www.kmpt.nhs.uk/carers/triangle-of-care

KMPT were very kind to engage with the ethnic MH carer forum to update us on their progress. We were joined by a number of Kent & Medway presenting their focus although time ran out before CNWL presented on their drive to include the Patient Carer Race Equality Framework.

CNWL, South London & Maudsley, plus Oxleas NHS and NHS England will update in February.

This concludes my brief update for the Ethnic mental health carers forum January 2024.

January Monthly Carer & Health News Updates 2024

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

January 2024 Carer and Mental Health news <- read more news items here.

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

Carer Videos

Carer Centre Newsletters

Latest Carer News

National Organisation updates

Carer Research Papers

Cancer Awareness updates

Unpaid Carer Discovery – Increasing digital access for carers

Hello carers. Below is an exciting new project from The PSC aimed at improving access to digital information for carers.

The project is led by Southwark Council, but also includes the 4 other London boroughs in the South East.

The project looks to how a new or improved digital offer can respond to carer needs, and help unpaid carers across SE London get better access and use relevant information, advice and support.

It is important that carers are aware of 3 things, which the project aims to improved.

The need to know the term carer, rights and services that are available to unpaid carers.
The need to care for their loved ones well as needing to care for themselves as carers and their family
Plus the need to plan the care now and in the future

To voice interest in the studies 1:1 interviews, please email heather.mctaggart@thepsc.co.uk and/or shuying.xu@thepsc.co.uk.

Interviews are approximately 45 minutes and your time will be remunerated with a £20 voucher or £20 donation to a charity of your choice.

There is no shame in the caring role by Matthew McKenzie

No one rushes to be a carer, usually most people plan to care for loved ones when they are much older, but life is not often like this. Life is complex, unexpected and has its ups and downs.

You did not expect this day to happen, but here it is. The person close to you has suddenly become unwell, it could be a close relative, a lonely neighbour or a dear friend. It’s different for everyone depend on the relationship, but no matter what the definition is going to be the same. You have become a carer.

What next? What will you do?

There is no hard and fast guide, a lot depends on your resources, support or connections. Caring for someone even depends on knowledge and information, but most of all caring depends on the care given. You know you will probably have to do this, there still is a choice, but are you prepared to live with the consequences?

No one should be forced into the caring role, no one should be that reluctant carer, but that day has arrived. Depending on that relation, you want to be there for someone, you feel you have to try. It might be out of duty, it might be out of love or sympathy. You want to care and you have made that decision.

You are going to care…..

Yet you are not fully aware what you have prepared yourself for. Until you and the person you care for know what the diagonsis is. You are hoping and praying that it is nothing too serious. You have a lot on the line. You do not want that person to suffer their quality of life. You also have plans, dreams and ambitions. All this has been sudden and you just do not feel prepared. You feel anxious on what the future brings, but you want to be there. You want to be there for that special person. It is all up to you because there might not be anyone else around to step in.

Then it suddenly happens.

You are told that diagnosis by a health professional. It does not sink in right away, for some the diagnosis brings relief. Some people know what they must tackle and this is all information. For other people the diagnosis could being heart felt grief and sadness. The diagnosis of the medical illness could be life threatening. It could be a demanding role, but you have already made your decision. You are going to be there, you are going to stay with the ‘cared for’ until as far as you can go.

It is just you still are not fully aware. No one has told you that you are now defined a carer. You think it might be a paid care worker, or a professional carer. You think that you are not doing anything special. You might be the husband, wife, daughter or son. You are just doing what is expected of a close relation, but it is hard.

It is so difficult….

You have to advocate and chase up information for your loved one. You have to cook and clean, check and double check that the ‘cared for’ health is not deteoriating. It is like a juggling act, you are careful not to upset the person you are caring for. They are emotionally struggling with how their life has turned out. They maybe upset that they have to rely on you, then again they cherish that you are standing by and ‘caring’ for them. Yet day by day, month afer month and onto the years, it could get harder. It takes around 2 years before many know they are a carer, but should it take that long?

Should you step back and focus on your own health and wellbeing needs?

Other people are telling you that you need a break, others say you need to know more about what you are caring for. Some people say you should join a carers group. Whatever others say, you being to feel guilty. Is it that bad to focus on your own needs once in a while?

No it is not bad to take time to focus on you.

We cannot care for others if we neglect our own health and wellbeing needs. There is stigma in the caring role, we can all agree on this. Many do not want to be defined as a carer, but that is ok. What is more important is that we get the help and support we need to provide the best care possible. It is not always about caring for others, it is also about caring for ourselves.

If you have found out that you are to do that caring role, ask health and social care services what support you can get as a carer.

Carers need that support as well.

Thank you for reading.

Supporting service users and carers after exposure to coercive practice

Hello Carers. There is a new research opportunity for carers of those using mental health services. The project is being carried out by Lewys Beames, PhD Student from Kings College London. Lewys will also be attending my ethnic mental health carers forum, which is many of the groups I run voluntary to give carers a platform for engagement and updates.

The project focuses on people who access mental health services will receive care and treatment for a time in a hospital ward or inpatient setting. In these settings service users are sometimes subject to practices which may be experienced as forceful or restrictive, such as physical restraint (being physical held by trained mental health staff) or being forced to take medication. These types of practices are commonly and collectively referred to as coercive practices.

We know that service users and carers can find experience of coercive practices distressing.

The purpose of this project is to ask about and understand the views of mental health services users, informal carers and inpatient mental health staff on coercive practices and ideas of how to improve experiences for service users and informal carers where coercive practice has occurred during a psychiatric inpatient admission.

As informal or unpaid carers, this is your chance to give feedback.

For more information, you can contact

Lewys Beames, PhD Student
Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience,
King’s College London
Email: lewys.beames@kcl.ac.uk
Telephone: 07876875892

A Caring Mind

A blog for carers of mental health and cancer