Welcome back to my carer website. As you might already know I faciliate the London Cancer Caregiver group. The group is supported by several London NHS trusts who also seek feedback on cancer services at 3 of their 8 hospitals.
You can take part
If you have been diagnosed with, or treated for cancer at Hammersmith, Charing Cross or St Mary’s hospitals within the last 12 months.
Or
If you have supported someone important to you who meets the above criteria. For example, you have attended appointments with them or helped them understand information.
If you wish to send feedback please contact – imperial.userinsights@nhs.net
Welcome back to the 5th in the series of carer activist interviews. I have a special treat for Carers Week 2024 as this time I have gone international and interviewed Bernard Coley who is a strong champion for caregiver activism internationally.
Bernard is a carer and also does a lot of work making the carer visible especially regarding the impact of Parkinsons.
He acknowledges there are many challenges facing those who try to connect with caregivers and these challenges are actually similar over in the UK.
You can watch the interview for free below as Benard talks about how important it is for carers NOT to stay silent about their role. There is also discussion on how members of the black community can make a difference when connecting with carers.
Although I run many carer groups focused on those caring for someone with a mental illness. I also facilitate the London Cancer carer forum. The group is based online to allow caregivers a chance to network, share ideas and be informed.
The are several reasons for such a group. The first is a platform to be heard or at least to reduce isolation.
It is not easy when you find out that someone close to you have developed cancer. There is shock, disbelief and confusion. How could this happen? Why them? Why me? Why now?
You are not sure where to turn, but for sure you will certainly listen to the health professionals. You will also do your best to be there for then person diagnoised with cancer. Still in the back of your mind, you might feel powerless. You are almost dependant on how hard the person you care for will fight.
So in the end you must remain confident, but the waves of emotions can keep flooding back. It is as if your life is put on hold because you are unsure about the future. Yet, you will try your best to plan as it is perhaps the best way forward. You do your best to listen to the fears your loved one might express, you will try and be there for them.
Still, deep down you dare not express your fears, concerns or worries to the person you care for. So who do you express them to? Who could understand? Would the health professional have the time to listen to you? How about counselling? There is excellent counselling out there, but it is not forever and you need to belong somewhere quickly. Even if it is just for a moment.
For carers who feel vulnerable there should be a platform where they can feel connected and to express their experience. There should be a place to learn from others and feel less isolated. As carers there should be a chance to try to share our journey because caring for someone can be a maze of complications and difficult emotions.
Since Carers Week 2024 takes place from Monday 10th June until Sunday 16th June 2024, The London cancer carer forum will focus on what support carers should seek for 26th of June – 5 pm till 6 pm.
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.
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.
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.
CONNECT REFLECT VALIDATE – 3 key takeaways to support someone in suicidal crisis
Jo Lambert
My name is Jo Lambert and I am one of six volunteers who made Hold the Hope, a suicide prevention film which explores how to support someone in suicidal crisis though a lived experience lens.
Over the last year, we have been working with film production company Creative Colony to bring our ideas and vision for Hold the Hope to life.
The film is split into two parts, with the first part told through two spoken word poems Today’s the Day and Hold the Hope (written by me and performed by award winning George the Poet).
It depicts the journey of someone who is in mental health crisis and the thoughts, feelings and emotions they experience. The second part of the film features behind-the-scenes footage and interviews with me and my lived experience colleagues.
Hold the Hope was funded by NHS South West London’s Suicide Prevention Programme (part of the NHS South West London Integrated Care Board).
The film will form part of a new life-saving training course that will be co-delivered by me and other volunteers alongside NHS staff for schools and the British Transport Police in South West London.
At the start of the project, I wrote a carer narrative, a distillation of my lived experience supporting a loved one in suicidal crisis. I condensed it into three key takeaway points – CONNECT REFLECT and VALIDATE in the hope that this might be easy to remember in a crisis situation. These three words and their significance are themes which run through both of the poems in the first film’s voiceover and in the second film, my colleagues and I share our lived experience examples of how to connect, reflect and validate someone in crisis and what holding the hope for them means. The film’s name derives from the name of the second poem.
As a mental health carer, I joined this project because I wanted to share what I wish I had known at the start of our family’s crisis. I am delighted that there are plans not just to deliver Hold the Hope into the police and secondary schools, but that there are already discussions about sharing it more widely across communities – with mental health carers, parents, universities etc.
Hold the Hope has been produced from lived experience, and my belief is that it is versatile and eminently portable because of that. For me the beauty of Hold the Hope is that it can be shared anywhere – it is just as applicable in a corporate setting so that staff can learn how to support family members and colleagues as it is for clinicians in a hospital who can deepen their understanding of their patients’ experience.
For me, this is the most important part of the poem. Once you start to understand the details of the back story to someone’s suicidal crisis, what is remarkable is not that the person had thoughts of ending their life but that they coped with as much as they did, as well as they did and for so long. The act of connecting, reflecting back and validating someone’s experience and holding the hope for them in their moment of crisis, can re-connect someone with their own immense internal power to survive.
It was an honour and a privilege to be part of this project and I have made what I hope will be lifelong friends as well as extended my own understanding from the shared experience of my colleagues.
Final words by Matthew McKenzie
I attended the Hold the Hope Launch on Friday the 8th of December 2023. The launch was at the Everyman Cinema Borough Yards.
I was not sure what to expect, but felt welcomed and involved. With collegues from Cygnet attending along with me, it was a great way to support the amazing work Jo Lambert and others had put into the project.
After watching the video Hold the Hope, I can certainly see the challenge that must be taken up by the police, rail service, schools and more. Suicide must be tackled as soon as possible and one of the best ways to do this is through education.
Health, social care and the mental health services can only grow stronger with the inclusion of those who have lived experience. It takes courage, determination and care for those who get involved, because they have their own challenges and trauma.
The film clearly shows the importance of holding on to hope. There is always a chance, but sometimes we cannot see this. Sometimes those who attempt suicide cannot see any hope and those who should help can lack the skills to spot and prevent suicides.
With Jo Lambert’s poem, I can see how this hits home. I can feel her words gently remind that there is hope.
I could not help but be intrigued after the film was shown. I wanted to hear so much from the inclusion of lived experience.
I asked Jo what she expected from the project and was amazed at how thoughtful her answer was. As a carer I can see the potential of the project. We need to include carers and help them tackle the challenges when caring for someone going Suicidal Ideation.
I admit there is so much to do, but with the Hold The Hope project, I can certainly see a strong foundation.
A Caring Mind 