Monthly Archives: October 2019

Black History Month – BAME carers

10177241_747738765268892_5890142387668348507_nThanks for dropping by my website. This blog is usually aimed at unpaid carers and promoting mental health awareness. There will be times I will provide updates from the carer forums I host around South London, but due to limited resources, I just cannot always update.

Going off topic, at the time of this particular post, it is the 28th of Monday October 2019. Black History Month is soon drawing to a close, but there are still plenty of events going on around the UK. I have just participated at the St Andrews Black History conference, which was the first of its kind for the Charity. I am bound to blog a bit more about that when I get some time, however the conference opened my eyes to the challenges of BAME nurses and mental health professionals.

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Still, I thought that this is not the time to focus on mental health professionals on this post, I want to jot down some thoughts about BAME unpaid carers. I know one of my forums is focuses on BAME families and carers, but to understand why I decided to set up that forum in Lewisham, it would be a good idea to carry on reading.

The struggle of BAME Carers

As an unpaid carer trying to work out my roles and duties. I felt my identity as a carer/BAME needs some highlighting. Even if it seems complex to others on being a Mental Health BAME unpaid carer. Such an identity shows the complexity and issues that I would need to face. Being an unpaid carer working towards being identified can often be a struggle, especially when caring during a crisis, but unfortunately carrying out a role and ones own identity can make matters tricky.

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It is a sad fact that BAME carers tend not to engage much with services. There seems to be some form of distrust as to why their loved one is struggling with health services, especially mental health services. I see there is much change going on and for the better, I notice so many people trying very hard to change things for the better and I thank them for this, but there is still some ways to go.

The issue with BAME carers regarding mental health services is that they can be tired of the same journey. Having to challenge unconscious bias or wondering if they are being judged on their actions or on identity. Sometimes BAME families and carers feel they are being pushed into labelled boxes as engagement policies strive to identify BAME issues.

It does not help that their are also social challenges as well as health challenges within the BAME community, which can make life even harder for BAME families and carers.

If all the above was not tough enough, then BAME groups sometimes suffer from getting specific tailored support due to cultural misconceptions, language difficulties, stigma related issues and unfortunately discrimination.

So with all the above demanding change and attention, what can a BAME carer like myself do?

The power of BAME Carers

The first thing is to raise awareness of these experiences. Ever heard of the quote “A problem identified is half solved?”. Well I am not sure if the quote was said in this many, but it speaks volumes. BAME carers need to unfortunately help in raising awareness, especially of their experiences. BAME carers ought to try and network with other carers, just as some way to reduce the isolation. The more a person becomes isolated, the more they lack that vital support.

Unpaid carers often miss out on social interaction, specifically if the carer is supporting someone with serious mental health illness. It is so important carers recognise their isolation and take steps to counter the loneliness. It is ok to feel lonely, but to stay lonely is not ok.

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As a carer, so much usually goes on in my mind, there probably is not a day that I do not replay my failings and difficult experiences in my head. Perhaps I am too hard on myself, but at least I am slightly aware that I need that support. If you are a BAME carer, do yourself a favour and network. Phone a friend even if it is just to be heard.

For black history month, I made it my mission to take part in events that celebrate the diversity of the community. As a BAME carer, if you can get out there and speak about your experiences, it can shed more light on the subject of identity. Sometimes it is just on learning about your past and the culture you came from, sometimes we are more than what we do.

You deserve to have your voice and relate to the community, even if its for just that month. Being part of something need not be a challenge, but unfortunately BAME carers need to find somewhere that supports their voice and urges them to be part of the health system. As with BAME carers, we should be encouraged to be aware and celebrate what makes us different and feeling no shame or stigma about it. Deep down thought as carers we are all alike as we experience the same emotion all other unpaid carers go through. Those would be the fear that illness is taking it toll, the joy that we are supporting those we care about and so on.

There is nothing wrong in being proud as a carer, its not an easy role and depending on the MH or health challenges, the struggle of caring should be counted. It is not your fault that the person has become unwell, you are trying the best you can, especially if you are a young carer.

As BAME carers, even though its great to have Black History month boost, celebrate and educate our achievements. It should also be used as a welcoming of all who want to celebrate with us. As carers our nature is to be inclusive of others and we also require others to emulate what we are trying to do, especially healthcare. As carers we wish to see inclusive healthcare celebrating diversity and being proud it if, despite the challenges being asked.

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From what I have learnt from Black History month, which can help in regards to BAME carers is that we wish to avoid being forgotten. There is so much more to be learnt from Black History month, but as a carer the fear is that we could be forgotten as those we care about slip into declining health. It is an awful fearful experience to struggle alone at times and it really helps if someone out there acknowledges our struggle.

Thank you for reading and have a happy Black History Month.

Lambeth MH Carers Forum update October 2019

20140710_143445Welcome to the October update of one of the 4 carer engagement forums I either promote and chair. This particular forum is over in Lambeth and kindly hosted by Lambeth Carers hub.

Carers’ Hub Lambeth is an independent local charity based in Brixton. They are there to relieve the stresses experienced by unpaid carers who live in or care for somebody living in Lambeth. This also includes those carers trying to care for someone suffering from mental illness, although I will use the term suffering lightly since some service users feel there is strength in at least fighting through mental health.

The Lambeth Mental Health Carers forum is a platform for carers to come together, discuss and engage with services. It is important for unpaid carers to have that relationship with community, social and mental health services. Carers need to have that space where they are empowered to ask why certain service provision is the way it is.

Most times unpaid carers are satisfied with the answers they get. Other times, such answers lead to more questions and some questions might even go so far to be quite complex. It is not enough for unpaid carers to tell their stories time and time again. Carers should be encouraged to point their noses into things that affect the carer’s journey.

For the October forum, we had Rebecca Martland visit us. She is doing a Research project on ‘Feasibility of high intensity interval training in improving physical and mental health in inpatients with severe mental illness’. Yes, it is a long title, but the project is critically important because so many patients suffer from physical ill health due to inactivity and having difficultly finding someone to provide mentoring in physical health training.

Rebecca Martland who is a researcher from the Institute of Psychiatry, Psychology and Neuroscience leads on this research. The IOPPN is a research institution dedicated to discovering what causes mental illness and diseases of the brain. In addition, its aim is to help identify new treatments for them. Rebecca also works for South London & Maudsley, where the IOPPN is in partnership with SLaM.

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Rebecca  wants to run more Focus groups with inpatients with SMI, carers of patients with SMI and staff to scope perceptions of attitudes and practicalities of the HIIT study.

It was great for Rebecca not only to have attended the Southwark MH carers forum, but also engage with carers from the Lambeth MH carers forum in the same month, which I admire greatly. I was happy to also hear some carers have signed up to her focus group to give ideas on the research.

The forum then spent some time going through last month’s minutes, which had been drawn up by James Holdcroft from Carers Hub Lambeth. James had done a brilliant job recording difficult meetings and helping us members keep focus on issues raised.

We discussed a few things from the minutes, one being the consultation on what will happen to Lambeth Hospital, others discussions where on SLaM’s patient record system and also discussions about carers assessments and tracking the numbers of unpaid carers in the borough Lambeth.

Next up at the Lambeth MH carers forum was Robert Stebbings the Policy and Communications Officer from Adfam. Robert was here to update the forum on the work Adfam has been doing throughout the year, specially with families and carers.

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Adfam is the national charity working to improve life for families affected by drugs or alcohol. They work heavily with families caring for someone affected by drugs or alcohol. Their vision is allowing those affected by addiction to have the chance to benefit from healthy relationships, be part of a loving and supportive family and enjoy mental and physical wellbeing.

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Adfam do a lot of campaigning and policy work. Off their site it was amazing to see how many groups their CEO was working with, those being.

  • The Advisory Council on the Misuse of Drugs
  • Commission on domestic and sexual violence and multiple disadvantage
  • Mentor-ADEPIS steering group
  • Safer gambling campaign advisory panel
  • Manchester Metropolitan University’s substance use and end-of-life care steering group.

One of the members of the Lambeth MH Carers forum had even been involved with Adfam visiting parliament to discuss the latest initiatives on addiction, which I was very proud to hear carers working hard to be heard.

Robert spoke about the difficulties Drug, alcohol and addiction can cause to families.

Those being

  • Financial Impact
  • Constant worry and anxiety on families affected
  • Bereavement, especially when addiction leads to someone taking their life
  • The problems of trust and denial.
  • Isolation
  • Impact on wellbeing and health
  • Feeling no light at the end of the tunnel
    ….and other life-changing impacts on families.

Robert also explained to the forum about the issues of stigma, which goes hand in hand when someone is suffering from addiction, as although addiction is recognized as mental ill health, a lot of people still see such behaviour as a matter of choice.

Plus he discussed what Peer Support and Advocacy groups Adfam have been providing and how they work.

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We were told how families and carers felt the following issues were a difficult path to navigate being,

Confidentiality
Loved one not honest with professionals or the nature of their problems
Service cuts and configurations
Plus families having to keep pushing the benefits of care involvement to professionals.

You can find out more about Adfam from their link below.

https://adfam.org.uk/

The members of the Lambeth MH carers forum discussed how the Carers UK conference went and were pleased I had a presence there. There was a request that I do a presentation on engaging with GP’s. The members are also very excited about next month’s visit from by the MP Helen Hayes. They probably are interested in what is being done for mental health in the borough of Lambeth and updates on how the borough of Lambeth & Southwark is supporting unpaid carers.

Southwark MH Carers forum October 2019

untitled-2Welcome back for the October update of the Southwark Mental Health Carers forum. Just so those to the blog understand. The term mental health carer does not mean the mental health of carers, it is a term to describe an unpaid carer supporting someone close who has mental health needs.

I would like to kindly thank Southwark CCG and Southwark Healthwatch in helping to advertise and publicise the carers forum.

The Southwark MH carers forum aims to allow unpaid carers to have a chance to understand and forum a relationship with mental health services in the borough of Southwark, we do not stop there. It is a right for unpaid carers to query health services and voice their opinions. Most members seek to understand why the social care and health services are the way they are. It does not help that the NHS changes rapidly and can be complex to adapt to local needs.

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The Southwark Mental Health carers forum had engagement from Kings NHS mental health strategy lead Gavin Smith to explain his mental health strategy. We also had Rebecca Martland from the Institute of Psychiatry, Psychology and Neuroscience attend to talk about her new study, plus we were hoping Zenette Abrahams could update us on Southwark Council’s carers strategy.

Before we continued on with the forum which runs from Southwark Carers. I noticed there was a lot of pictures and items on show. I had just caught the Southwark Carers Black History month exhibition and celebration, which was put on by one of the Southwark Carers Trustee. I spoke to her about the importance of Black history, which takes place in the month of October.

Just so you know Southwark Carers provides several services, one being the enabling service, which encompasses active listening, advocacy, signposting and support in tackling stressful issues outside of the caring role. The other being empowering carers with information and knowledge about their rights.

There were lots of photos on display regarding heros of black history and what it was like to live in those times. The CEO of Southwark Carers kindly showed me one of the costume cut outs.

 

We had a good turn out at the carers forum as I explained the agenda and unfortunately Gavin could not stay, but would be back again in future. I explained to the members of the forum as to why it was important to have a platform for carers to at least be interested on what their borough was doing for them. It should be a right for carers to come together and share what is working for them and what is not working.

The forum still needs to grow further so I have some work to do. I spoke on the updates provided by Southwark council in regards to the Carers Pathways Project Board. The Carers Pathways Project Board was established at the end of July, and work being undertaken around the carers pathway. I was given a contact to at least find out how the board was getting along. It is important carers be updated on what will be provided for them, rather than systems being designed where there is little or no carer input. It does not matter if it is bad news, but carers should know about it.

Next we had Rebecca talk about her project regarding improving physical health of patients on the inpatient wards. Basically they are starting a feasibility to see whether High intensity interval training (HIIT) might be acceptable and helpful for inpatients with Serious mental illness.

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Eligible patients who consent to take part would be randomly allocated to HIIT or to Treatment as usual. The HIIT involves alternating short bursts of high intensity exercise (1 minute intervals) with recovery periods of light exercise (90 second intervals) (Each session will take 11 minutes overall + warm-up and cool-down) and will take place in the Bethlem and Maudsley Hospitals on a stationary bike – People will be asked to attend for up to 12 weeks, even after their discharge, but they’ll start as inpatients.

The group discussed how important exercise is for those suffering mental ill health and felt physical health support was not focused on enough. Some members signed up to be part of Rebecca’s focus group.

I then updated members on the following being Guys & St Thomas carer’s policy and it means for both Kings NHS trust and Guys and St thomas NHS Trust.

I then updated the members about the Carers UK conference and what I spoke about at the conference, then I spoke about my visit to South West London & St George inpatient ward to speak to staff about carer involvement. I then spoke about the Lewisham CCG Mental Health stakeholder event with some members querying if Southwark CCG are doing something like that.

I then updated members regarding the carers support group and also that there will be a joint Southwark and Lambeth MH carers forum next month where MP Helen Hayes will be attending.

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MP Helen Hayes

We then heard updates from members who attended the SLaM NHS Southwark Advisory group, where plans to redevelop a ward were shown, plus a few other updates. Some members also registered to be on Southwark’s carers members list.

For Black History month I will be speaking at St Andrews healthcare on a carers view of BAME inclusion in the NHS and will probably write a blog before then.

Overall the Southwark MH Carers forum was empowering and there is plenty of work to do to raise carer focus, awareness and empowerment in the borough of Southwark.

Lewisham Mental health Stakeholder event 2019

imageWelcome to another blog from South London unpaid carer Matthew Mckenzie. On this particular blog, I am covering how the Lewisham Mental Health Stakeholder event went. Health Commissioner stakeholder events usually run once a year, these events are usually borough wide and incorporate the community regarding health interests.

The theme of the Lewisham CCG Mental Health Stakeholder event was on “Me and my community”. The theme was to help bring the community together to discuss, plan and celebrate how Lewisham as a whole are working towards the mental health and well-being of its community.

The event took place over at Lewisham Town Hall – Civic Suite from 9:30 am till 4:30 pm. If I remember correctly, the event takes ages to plan and I believe such a stakeholder event was not run in 2018. So the event was great received, due to many mental health service updates and changes in the community.

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The stakeholder event had many stalls from providers, workshops, sessions and talks and presentations. Those involved in the event were of course Lewisham CCG, Lewisham council, South London and Maudsley NHS Trust (who provide MH services in the area), Lewisham Healthwatch, Bromley, Lewisham & Greenwich Mind, Compass (services for children), Lewisham Carers, Department for work & Pensions, Sydenham Gardens, GCDA, Lewisham college, Lewisham & Greenwich hospital trust and more.

To open the event, we had the welcome from Councilor James Rathbone, who is currently Lewisham’s Mental health Champion. Next was the Lewisham Mental Health Alliance with updates provided by Donna Hayward-Sussex – who is SLaM’s Service director and also Dr Charles Gosling who is the CCG’s senior clinical director.

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Since the event was themed for Black history month, plus the London borough of Lewisham being a diverse community, we have an update on health inequalities in the borough from Dr Catherine Mbema who is the Director of Public Health in Lewisham.

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Next up was CEO of Your Voice in Health and Social Care who have partnered with Carers Lewisham. Tim Spilsbury spoke about the difficulties unpaid carers face in the borough of Lewisham and how the charity is seeking to tackle those issues. To my surprise he spoke about the Triangle of Care, which is a policy aimed at buildng a working collaboration between the service user, professional and carer.

One thing critical about stakeholder events is giving the community a chance to ask questions or bring out statements, so I was glad to see a panel session consisting of those who spoke previously including the Joint commissioner of Adult Mental Health and Head of services for BLG-Mind. We certainly had some hard hitting challenging questions from the audience, although I felt some great work has been done by the services so it was a shame no one mentioned anything about that.

Next up after the 20 minute break and some networking were the Workshops. The aim of the workshops was to either educate the community on mental wellbeing, provide updates on services, a way to promote services and allow for stakeholders to connect with the community.

Prevention – This workshop looked at Social Prescribing (connecting people in their community)

5-ways to Wellbeing – This workshop taught by Lewisham Healthwatch looked into those who work with children and young people.

What is the Relationship between Mental Health and Internalised Racism? – This workshop taught by Hillna Fontaine, explored the complex issues of race and mental health.

Carers Workshop – This workshop co-produced by some of my members of the Lewisham Mental Health Carers forum and Carers Lewisham and myself.

Mental Health Equalities – What we know, our ideas and your suggestions – This workshop facilitated by SLaM equality team looked into what the Trust is doing to improve the experiences of Black, Asian and Minority Ethnic (BAME) service users, carers and staff.

Social Inclusion Recover Services; Paths to Recovery at Sydenham Garden – On this workshop, we could find out more about Sydenham Garden’s work – helping people in their recovery from mental and physical ill-health in Lewisham.

Mental Health in Schools: Challenges and solutions – This workshop aims to explore mental and emotional health challenges faced in school environment.

Healthy Walk – An excellent workshop, were attendees found out about the greenspace, gentle exercise and good company are great for physical and mental wellbeing and were actually walking outside.

The Lewisham Wellbeing Map: showing the great places for health in our borough – This workshop looked into a social prescribing map for link workers, navigators, and signposters.

Help in a mental health crisis – A workshop taught by the manager of the Ladywell Unit looking at where you can access help in a crisis and what you can expect from services Alternatives to going to A&E

DWP – Forest Hill and Bromley Jobcentre – The Partnership Team and the Disability Employment Advisers provided people with an insight to what is available to support those with Disability and Mental Health under Universal Credit and Employment Support Allowance

Wellbeing Education at SLaM Recovery College – Lastly we Trainers from SLaM Recovery College will discuss how the college operates, the benefits of attending for SLaM service users, carers/supporters and staff members.

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A quick mention on the carers workshop I co-produced with members of the Lewisham MH carers forum, we looked at ways to involve unpaid mental health carers in the community as carers like myself can be isolated, lacking support and driven to desperation when supporting someone with mental ill health.

I cannot thank Lewisham CCG enough and also Carers Lewisham and YVIHSC for helping and attending.

All in all, I thought the event went very well with special thanks to Karin Barthel who is the senior CCG comissioner for involving myself and carers lewisham to run the workshop in co-production.

I hope other CCGs will continue to run stakeholder events, or I am wondering how do they engage with their communities when it comes to mental health and wellbeing.

Thanks for stopping by.

Being part of something

106542Hey there! Welcome to another new blog from unpaid carer Matthew Mckenzie. I have just come back from the Carers UK Conference 2019. As a carer I was inspired on how the event went and felt part of something. I felt part something very big and felt I should write up a couple of my thoughts on this post.

I had shared a panel session at the Carers UK conference and due to limited time, I could not manage to say all what I would have liked, however I felt I got the main messages out there to the audience. I wish this particular blog post carries on my message to other unpaid carers who stumble across this blog post.

This message is to you…fellow carer.

Continue reading

Lewisham MH Carers forum September 2019 update

133Welcome to the September update of the Lewisham Mental Health Carers forum. I guess you might already know, that I facilitate two carer strategy forums in the borough of Lewisham.

 

 

However one of the forums focuses more on BAME queries/issues with families and unpaid carers. The one that runs at Lewisham Carers tends to focus on unpaid MH carers as a whole.

Mental Health Open Forum

Just as a reminder, the term ‘mental health carers’ refers to unpaid carers supporting those with mental health needs. I know not many people are happy with labels, but on some level it just helps with identification and at best helps to lessen isolation as people know they have something in common with each other.

For the September Lewisham Mental Health Carers forum, we were lucky to have Lewisham’s latest mental health Champion James Rathbone, who is also the Labour Councillor for Lee Green. As unpaid MH carers, we were also joined by South London & Maudsley’s Quality Improvement QI Facilitator. It is important NHS mental health trusts engage with families and carers at grassroots level.

We first heard from Cllr James Rathbone who has lived experience of mental health. He spoke about how he became a mental health champion and why he would like to make a difference in the community regarding mental health needs. Not every service user can speak out when addressing mental health issues and it helps when someone is high profile enough to raise mental health at important meetings.

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James specified he does not control how Lewisham health services run, but he will bring mental health to attention when the issue arises. It is important that a mental health champion gets out and engages with the community. It is important to hear what the community says about the issue of mental health needs. James raised the situation of mental health needs from the BAME community and felt there needs to be more priority due to a high level of BAME using mental health services.

James was critical with the term ‘parity of esteem’, because he felt the term itself does nothing to address the real issues. He felt the main issue was funding and the new term should be ‘parity of funding’. He felt what are services bringing to the table? It is easy to talk, but funding matters in the end, plus how the funding is used.

James talked about the big launch of the Lewisham suicide prevention strategy held on the 11th of September 2019. I am not fully aware of the suicide stats in Lewisham or other London boroughs, so it would be interesting to chase that up. Especially since I am a carer member of SLaM’s suicide prevention group.

The next and last point raise by Lewisham’s Mental Health Champion was on how Families and carers can be involved in shaping Lewisham’s mental health services. I asked this query, because families and carers should feel part of the system, they should have their views and experiences taken into account and feel empowered they have the chance to be involved.

James spoke of how carers can become members of their NHS trust and have a greater say on what is going on. James spoke that we should pay attention to what SLaM governors are doing and try query what they are involved in. James mentioned that Lewisham CCG have their public reference group, which allows for involvement and it helps to understand the important health policies affecting the community.

We were glad James mentioned the important Lewisham stakeholder event on the 14th of October, since members of the MH Carers forum will be holding a workshop there about carers.  The link has been added below.

https://www.eventbrite.co.uk/e/lewisham-mental-health-stakeholder-event-me-and-my-community-tickets-72248203321

On the 16th of October will be Lewisham Child & Adolescent event, although not sure where it will be.

Some questions from the forum asked at James were on the merger of the six CCGs, the use of the Joint Health and Safety Committee and James returning for the Lewisham BAME forum.

Next up was Aaron Brewer who is SLaM’s quality improvement facilitor. Many NHS trusts around the country have quality improvement projects to work out how to improve services for patient and carer (yes, thats right! carers also use services). They want to ensure that the people that access our services experience the same standards of care no matter which borough they live in or which service they com are under.

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Aaron spoke about SLaM’s Inpatient Care Process Model. The model is broken down in to six phases of an admission. Lewisham are currently implementing three phases. The decision made to admit and first 24 hours, First 24 to 72 hours in
hospital and Final discharge preparation and discharge.

The model is broken down in the following sections.

– Decision made to admit and first 24 hours
– First 24 to 72 hours in hospital
– Getting better
– Getting ready to leave
– Final discharge preparation and discharge
– Staying well

Aaron then spoke about Lewisham’s Hospital patient system ‘I Care’ and how data can be used to focus on quality issues and quality behaviour. The group were shown some graphs and quality data to help educate members on how hospital data can help make decisions. We were shown nothing confidential, but numbers and figures. It was pointed out that the graphs look very complex, but I always stress carers MUST get used to poking their noses on data and quality. We need to understand how NHS systems work and how they make decisions on services.

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The following graphs were shown on

Hospital Length of Stay
Discharges by directorate
Readmissions within 30 days
Admissions and Transfers into External Overspill

The next discussion was on how the Hospital’s patient system can help in improving care and outcomes. These will follow on from the Red2Green tool. The Red2Green is a tool to aid daily multi disciplinary team decision making to ensure that every day spent in hospital is meaningful and contributing to a person’s recovery. Red2Green was developed in an acute general hospital but has since been adapted for mental health settings, multiple NHS trusts are now using it and having success in reducing unnecessary delays, length of stay and bed occupancy.

The Ladywell unit based at Lewisham hospital has several mental health wards. We were shown how one of the wards operates in regards to the Red2Green tool. The ward chosen was the ‘Powell Ward’, where we were explained the following

180 Green Days and 4 Red Days for 18 patients in August.
No Delayed Discharges.
Targetted Theme: Awaiting Social Services

The last part of the discussion was on Standard Operating Procedures (SOP). The aim is to agree Standard Operating Procedures (SOP) to unblock common barriers to discharges between community and inpatient services. The more I looked at who was involved at the SOP, the more my head began to spin because I felt they need to engage with the forum somehow or the risk is the community would not always know what is going on, however we did mention we have invited Lewisham’s head of social care to attend.

This concludes the update for the September Lewisham MH Carers forum. As a note due to resources, I cannot always update on the 4 forums, but will try every so often.

The next Lewisham MH Carers forum is on the 29th of October