Lewisham MH Carers forum June 2020

133Welcome to the June update of the Lewisham mental health carers forum. A forum aimed at unpaid carers supporting someone close who has a mental illness. This is one of the 4 carer groups that I run per month. In attendance were our usual carer members along with representatives from Lewisham Healthwatch. The speakers from South London & Maudsley NHS trust being psychiatric Liaison staff and the lead from SLaM Patient Advice Liaison service. We were also joined by SLaMs involvement lead for Lewisham and Croydon, plus we were also joined by the Mental Health Lead of Lewisham and Greenwich Hospital trust.

Speaking first was the psychiatric liaison nurse who spoke about the importance of their service. Ama the Liaison Nurse mentioned that SLaM’s psychiatric liaison is a 24 hour crisis service that works in partnership with the Emergency Department. Specially trained mental health professionals are there at Lewisham Accident & Emergency to assess acute MH referrals.

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Once the assessment is done, the patient is signposted to the appropriate service to provide further support to manage the patient’s crisis.

The patient might be sign posted to the following services.

  • Primary Care Services – GP, Solidarity in a Crisis (charity), Harbour Cafe (MH crisis cafe) or IAPTs which is a counselling service.
  • Secondary Care Services – Community MH Teams or to Early Intevention Service.
  • Other services – Home Treatment Teams or Inpatient Admission if patient is very unwell.

The Psychiatric Liaison Team consists of the following

– Band 1 seven senior PLN (Triage Function)
– Band 3 six PLNs
– Band 1 five RMN
– One Harbour Cafe Staff and a Clinical Support Worker
– 1 Occupational Therapist (in-hours)
– Doctors

Ama spoke about why the role is important. Which the main points are

  • Accessibility in that it is a 24 hour service that is readily available to support patients when they are in a crisis.
  • Provides appropriate signposting
  • Saves time
  • Provides psycho-education for the Emergency Department who may lack the knowledge of mental health symptoms.

Ama then spoke about her role as Carer’s Lead in the service as their are many carer leads on the other inpatient wards. The role of a Carer Lead in the NHS Trust is to ensure that those caring for people with mental health problems raise their concerns and are supported. They also lead on ways to improve how staff work with carers.

Carers Leads encourage carers to get involved and have their say about NHS Mental health services that SLaM offers to both carers and service users. This is so that they might be able to make improvements and provide a better service for all.

Ama then presented the forum with a template of the NHS Trusts Electronic Patient Journal with is SLaM’s patient database system. One of the main aims of the system is to help identify patient their family or who their main carer is. The NHS Staff check on EPJs to ensure that patient or carers can have a conversation with the staff about what is recorded on the system.

Ama explained some of the patient system database processes to the carer members. One of the things some members of the forum were interested was the NHS Trusts “Carer Engagement and Support Plan”. A member of the forum has never heard or had a CESP and were wondering what is its function.

Ama moved on to explain what a Caldicott Guardian’s role at the NHS trust does. She also explained some notes about the information governance team. She explained the following.

  • How Caldicott Principles justify the purpose for using confidential data.
  • How the NHS Staff only use information when necessary
  • How access to data should be on a ‘Need to know’ basis
  • How everyone must understand their responsibilities
  • On how the duty to share information can be as important as the duty to protect confidentiality.

Ama then talked about the Patient survey and how it goes on to improve services.

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Ama admitted that a lot of the times in the A&E setting a lot of patients that turn up do not actually have family, close relatives or carers, which is unfortunately a sad fact. It is stated that some families or carers might give up on someone who has serve mental health illness or that the patient does not want anything to do with their family, friends or relatives. A lot of the time it could be that the illness pushes people away and it is well known that those suffering psychosis are suspicous of those trying to help them.

The presentation moved on to the changes to the team due to the COVID-19 situation as the team has moved to the Ladywell Unit Outpatients department. When a patients does present at A&E a band 7 nurse will decide if the patient can be transferred safely to the outpatient department or any of the Primary or Secondary services.

After the presentation we had a number of questions from the carer members of the forum. The questions raised were of the following

  • Where does the patient survey information or PEDIC data go and how does anyone outside of SLaM get an idea that the data is valid.
  • Without carers how do patients who have MH illness manage to present to A&E
  • How hard does the trust tackle the problem of patients who do have families or carers and try to include them in the patients care?
  • Another carer agreed on the importance of confidentiality and wanted more information about services provided.
  • One carer spoke about how SLaM’s OASIS service was of great help to them and wondered if or why young patients were not referred to them.
  • Another carer member spoke about the importance of “Advanced directives” and wondered how often the MH trust were using these, especially if patients relations with their carer was breaking down causing a risk of patients ending up without a carer and becoming more vulnerable.
  • Other members were worried that because of COVID-19 that services especially the DWP were under so much strain that this caused more patients MH to flare up.
  • We also had a long discussion on what the state of data is regarding patient to carer ratio. People are wondering how many carers are identified in Lewisham.
  • There was concern that Primary and Secondary services do not speak to each other and even though their patient systems are different, it is hard to track the situation of MH patients. This is a big problem if confidentiality is added and the family or carer cannot get their concerns across.

Although some of the questions were responded to at the online forum, a lot of the questions will be taken back to the trust where members are hoping for an update in the future forum. The forum moved to discuss how families and carers should be encouraged to be aware that they are carers and identify themselves to patient systems. This is so families and carers can be tracked and be involved in the care and support of their loved one. The forum requests someone responsible for GP services in Lewisham present to the forum regarding carer identification at GP practices.

Next we had Kevin Ramjeet speak about his position as Mental Health Lead for Lewisham University Hospital and Queen’s Elizabeth Hospital in Greenwich, Kevin works closely with SLaM in Lewisham and Oxleas in Greenwich. I mentioned in the forum that Greenwich Healthwatch are looking into what is provided for MH carers in borough. Kevin is particular interested in patient feedback regarding hospital emergency departments regarding waiting for bed, waiting times and patient experience of services.

Lewisham and Greenwich NHS Trust

Next we had Jim Ells from SLaM PALs speak about the service. Jim responded to the following queries from the forum.

What is PALs?

Basically Patient Advice and Liason service, which is a way to allow people to be placed in touch with the correct department.

What is the PALs query process?

There was a bit of confusion with this one, since Jim felt this question was on how staff at the NHS trust would run a query to look for information, although I had meant it to be some process on if a service user/carer raised a question on where it would go.

What type of compliments, queries or complaints from carers?

These are varied and queries can raise enormously. It depends what type of information a person was looking for. It would be easier if queries are dealt first within PALs before it escalates to a complaint unless the query was a complaint in the first place.

How can PALs work with this forum or the Lewisham BAME one?

Its about time and relationship, as long as Jim can attend the forum, but it depends on what the forum requires of the PALs service. The forum is interested in stats to get an overall view of the service to see what is working and what is not.

The forum was interested in the complaints process, but Jim mentioned that complaints is under a different department. A request has been put in for the complaints staff to attend the carers forum. Some were concerned what would happen if a complaint was made about a staff, what would be the reprecussions especially if carers are not aware how to make a complaint or refuse to.

A carer raised an interesting question regarding the use of staff email accounts being closed causing complaints and queuries to be lost. It was noted there is a database system for queries to be placed into rather than relying on emails, but there is a system where staff can access email accounts if information is required in extreme circumstances.

Update from SLaM involvement lead

The last part of the carer forum was updates from the Lewisham and Croydon involvement lead. As you might already know SLaM prides itself on involvement and co-production, which is something I am interested in when I engage with other Mental Health NHS Trusts, it is also something I am looking out for in Acute NHS Trusts being Guys & St Thomas, Kings NHS Trust, Lewisham & Greenwich NHS Trust.

The update from the involvement lead was on discussion of the IAPTs service lead regarding waiting times and when they can present to the forum regarding IAPTs and how things are progressing with the service.

There was also an update on counselling for carers via Carers Lewisham, which cannot be offered for newly registered carers but this is something they are looking into.

There is also a new trust online service from SLaM called “BETH”. which used to be called “My Health Locker”. Basically “BETH” is a new way for service users, carers and staff to communicate and collaborate.

For service users, Beth supports personal choice and autonomy. Where SUs can link their Beth account with their NHS number to access their health records in order to:

  • see who is in their care team and support network
  • securely message their care team
  • access their current care plan
  • see all their appointments
  • keep track of their mood and sleep
  • use online free and trusted health resources

There will be an remote online demonstration of BETH via recovery college booking process next week.  Other updates were on the Lewisham Advisory group regarding developing links to the BAME community, investigating how services were responding to Mental and physical health and looking more deeply into online services via the COVID-19 situation.

For the July forum we will have the Patient Experience and Quality Manager to speak about

– Their role at the trust.
– The importance of patient data
– A Brief overview of how PEDIC data is gathered
– PEDIC stats on patients in Lewisham so far plus if possible, ethnicity
– Plus Any data regarding carers in Lewisham.

The forum is interested in data queries showing identification of carers and what has been offered to the carers e.g. Carer Support and Engagement Plans or Carer Assessments.

Making that difference

Silhouette of man showing his hand on sunset sky background, Successful business concept.Welcome to a blog site of former carer Matthew McKenzie from South London. I used to care for my mother who passed away this year. For close to 18 years I have been supporting her and my brothers who both have autism, but for my mother she had a difficult time with mental health. There was only so much I could do and a lot of support depended on health and social care services that were already struggling.

Fast forward to the year 2020 and as I have moved beyond my role as carer, I still support my brothers or as a decent family member still be there for them. My main carer role has ended and yet I feel many other carers have just begun especially due to the corona virus hitting the country hard. In the back of my mind, I really feel for families and carers having to struggling with their caring duties under lock-down. It is true that the lock-down is slowly being eased, but there is always the fear of increased virus infections. With the lock-down also came economic hardship and it only looked like we were just to come out of austerity.

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With the news that we are now to see a recession that we have never experienced before, many families and carers are wondering to themselves when will this end? For 10 years, carers had to scrape through the cuts to social services, cuts to the NHS, cuts to welfare and struggle to make ends meet, because if you are caring then it is difficult to be earning.

Most carers do their role out of emotional attachment, duty and love. Carers are not in it for the money because we are not care workers. Of course money does help, but in my carer journey I never received any benefits because I work part time. I

Midway through my carer journey, I thought to myself what else could I do to share knowledge, skills and experience to help other carers who care for someone with a mental illness. I would often share my story to health professionals hoping that a carer’s story will make them think twice when involving carers. Carer stories are so important to raising awareness, but they are not the only tool in the box. I thought to myself what else could I do raise the banner of unpaid carers? I then got involved in my local mental health NHS Trust. I felt as carers with our experience and motivation, we can work with the NHS to promote and co-produce services that have carers in mind.

Yet, all the above was a good thing to do as a carer, I felt that was not enough. After a while I developed my website and social media to bang the drum of carer awareness. I have been running my blog site close to 7 years now and it has been shared and referenced by the NHS for many years. I have been proud of my site, social media, podcast and YouTube channels. Still, I thought that is not enough. What else could I do?

Matthew McKenzie copy

I then moved to set up carer forums, which are designed to help families and carers query and engage with the NHS and also social services. Over the 5 years the carer forums have been running in Lewisham, Southwark, Lambeth and a special BAME carer forum in Lewisham. I run 5 a month and also run a peer carer support group in Greenwich with plans to set up other carer groups in the future. Still, I felt more could be done.

I can see myself moving towards carer peer support and carer champion although in the realms of raising awareness of carers supporting those with mental health challenges. As good as it sounds, it is not enough so with some thought, what could make the difference?

The Difference.

The thing that will make a difference is you. If you are a carer who is caring for someone with MH challenges. I know that you are the spark that can set the flame alight. I have done a lot, but I know that carers out there are going through a tough time taking the blows and wondering if anyone out there can recognise their plight.

If you are a carer reading this, I want you to take note that unfortunately caring in itself is not enough. You have to get out there and find out what your rights are. It is so important to register at the carer centers and find what support groups you can access. Learn the experiences of other carers, carers have all different experiences and we can share what works and what does not. As a former carer, I am asking you to dig deep and give just a bit more, but not in your caring role. I want you to get out there and network. I want you to use your opinion and link up with healthwatches to feedback views on health and social care.

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It is your right as a carer to say what is helping you. It is also a right to mention what is helping the person you care for. As a carer if you do not say anything, the risk is health and social care services can only guess what support you need. Do not be afraid and put off in using your voice. Do not let anyone put you off in sharing your carer’s experience. As long as you are being diplomatic, then leaders of health and social care should take your experiences to heart and will involve you.

As a carer you are not alone. There are so many mental health carers out there, but you must take that step to network with them. You must take that step to band together with fellow carers and educate each other about the systems in place. I promise you that services will change and with the recession heading towards us then the change will not be for the better.

The time is now to make your voice heard and group together. The time is now to support charities and organisations that fight and advocate for carers. As a carer you must not shut up and put up with what is available. You are not only risking the health of your loved one, but the health of yourself if services are not supporting you.

Band together with carers and encourage them to get involved and use that voice as the larger the group,  the louder that voice.  With millions of carers, you already have an army at hand.

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Make that difference not as a carer, but someone that counts. Do not be ignored and fade away into the darkness of social distancing, loneliness and isolation. Think to yourself that you count, or even better say it. You as a carer can make that difference and make it count.

Good luck with your carers Journey.

Lewisham BAME MH Carer Forum May 2020

enteranceWelcome to the May update of my Lewisham BAME mental health carers forum. This is one of my 5 carer groups that focuses on the experiences of BAME carers and sometimes BAME groups suffering mental ill health.  I usually run this forum from the Lewisham Branch of Bromley, Lewisham & Greenwich MIND.  Due to CoronaVirus I have moved the forum online via ZOOM.

As a reminder the forum is not a support group, but a way to connect to health providers in the community. The forums focus is of course on mental health services so our local mental health trust (South London and Maudsley) engages with BAME families and carers at the forum.

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Beyond Carers Week 2020

smallerHello everyone and fellow carers. Just a quick blog post now that Carers Week has ended. For those who do not know about Carers Week, basically it is an awareness event that looks to raise the awareness of unpaid carers throughout the week of June 8th – 14th.

Carers Week is an annual awareness campaign to celebrate and recognise the vital contribution made by the UK’s 6.5 million carers.

My view on how Carers Week 2020 went

I am not sure if many people or blogs mention views on post events. I felt Carers Week 2020 really raised the bar for Carers week 2021 due to the amount of activities, events and awareness drives from people, charities and organisations. I have been involved in quite a few carer awareness events over that week.

It was great to see so many mental health trusts help promote the awareness of mental health carers. Mental Health can often be portrayed as the hidden illness and due to the theme of Carers Week 2020 “Making Carers visible”, it is so important carers become unhidden.

Mental illness can come with stigma and so caring can also come with its own stigma. Some people caring for someone with a serious mental illness can remain hidden due to shame, guilt or desperately holding on to the family relationships. Many do not know or understand that if they are caring then they ARE carers.

Carers Week gives the chance to tackle carer stigma and more.  Carers need as much awareness as possible.

My Thanks for Carers Week

I would like to thank Carers Week for involving me and giving me a chance to voice my carer’s experience.

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It was great to see my story mentioned in South London and Maudsley’s blog posts.

https://slam.nhs.uk/media/our-blog/carers-week-matthew-s-story/?fbclid=IwAR2ZsJiAElOqRwiLE5LB-agDHL8MyuDsbaop_HelUTKHVQn9LiBR9Rnd1zM

There of course were other carer awareness raising events from other MH NHS trusts I am involved in as I noticed West London’s own carer story also appeared  (shown below).

https://www.westlondon.nhs.uk/news-events/carers-at-the-heart-of-patient-care-anns-story/

With Oxleas,  SWLSTG, CNWL NHS Trust and many others also promoting Carers Week, I hope they continue to support the important work carers do.

I would also like to thank Carers Lambeth Hub for their promotional video on Carers Week shown below

I even did my own video

Lastly I want to thank the charity SANE for helping to promote my views regarding mental health Caring.

Matthew Mckenzie - SANE

Beyond Carers Week

With Carers Week there is always a chance to educate not only health professionals and decision makers, but also the carers themselves. There is no shame in being there for someone, even if the mental illness pushes you away. You would want to be there for the person you care for and not see them continue to suffer.

The state of health and social care now demands carers put in extra to support who they care for, because with the strain on the system it seems the community must take on more. We know health and social care has done so much, but with the lack of nurses entering the profession, lack of social workers, strain on the NHS and the impact of COVID-19 more will be asked of the millions of carers across the UK.

Carers Week is aware of these challenges and those involved will do as much as they can to reduce the strain on Carers. Still we all know that with the end of Carers Week, Carers will continue to rely on charities like Carers Trust and CarersUK and the support of the carer centres and the health and social care system.

I am not asking for much but continued awareness and involvement of families and carers, we deserve to be recognised.

My Carers Pledge

As I move from my role as carer to expert by experience. I will strive to also continue my role running my carer forums and carer support groups aimed at mental health carers.   You can check out my online carer groups below

https://caringmindblog.com/mental-health-events/

I will promote the importance of involving, identifying and engaging with carers of those suffering mental illness and I will work to promote mental health.  My focus will also be on carer peer support, but also advocating for carer empowerment as carers must be given the chance to query systems and policies.

Thanks for reading my blog post.

Study in the experiences of loneliness and isolation of MH Groups

Researchers at UCL would like to talk to people aged 18 and over to find out about their experiences during the virus outbreak, and more generally, their experiences of feeling lonely or isolated and how they may relate to experiences of mental health problems.

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For more information on this study please visit their site below

https://www.ucl.ac.uk/psychiatry/research/epidemiology-and-applied-clinical-research-department/loneliness-and-social-isolation-26

Southwark MH Carers forum May 2020

logo and coverHere is May’s update of the Southwark mental health carers forum. This is one of the 4 to 5 carer groups I run each month. All carer forums and support groups are run online via Zoom due to social distancing because of COVID-19. I feel families and carers still need to know what is happening with services especially when health and social care is under strain.

In attendance for the forum we had carers from Southwark and also from Lambeth since the Lambeth carers forum is not running at the moment. We were also joined by trustees of Southwark Carers, plus Southwark Healthwatch were in attendance. We were also joined by Maudsley’s NHS Southwark inpatient carer lead, plus a carer who co-runs their carer groups. The main presentation was from Bernadette Pickerell who is SLaM’s Mental Health Act Team Leader and Senior MHA Co-ordinator.

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Lewisham MH Carers forum May 2020

Welcome to the month of May’s update of the Lewisham Mental Health Carer forum. This is one of the 5 carer groups I run once a month to give carers a chance to find out what is happening to health, mental health and local authority services aimed at carers.

For this month we were joined by South London and Maudsley’s Associate Medical Director Dr Zain Sadiq who is also a psychiatrist. We were also joined by Lewisam’s Wellbeing Map coordinator Tim Bradley. At the forum we had a number of carers as well as carer champions, the modern matron from SLaM’s Ladywell inpatient wards. We also had in attendance the SLaM involvement lead for Lewisham and Croydon as well as Carers Lewisham staff and a representative from POhWER mental health advocacy.

I explained the reasons for the forum being the following.

1. It can be difficult for Carers in Lewisham have an idea on MH services and influencing them.
2. MH carers need some empowerment in their role.
3. Services have suffered from cuts, carers need to act in order to support everyone.
4. There needs to be an engagement platform for carers to discuss issues.

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LSE research on Carer wellbeing

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Research at the London School of Economics and Political Science want to understand what impact covid19 coronavirus has on mentalhealth, wellbeing and loneliness of carers supporting people with poor mentalhealth. If you are an unpaid carer help LSE by filling in their brief

https://lse.eu.qualtrics.com/jfe/form/SV_3ItyiAwSrT7xeTj

The survey should take about 15 minutes. All information will be treated in confidence. You can change answers until you submit the questionnaire. It has received ethical clearance from the London School of Economics and Political Science. If you have questions please contact David McDaid Email: d.mcdaid@lse.ac.uk More information at http://eufami.org/2020/04/28/covid-19/

Mental Health Awareness Week – Kindness

 

Giving help

Welcome to a caringmindblog written by a former carer Matthew Mckenzie in South London. As of this blog’s writing it is Mental Health Awareness Week which is Hosted by the Mental Health Foundation. Mental Health Awareness Week takes place from 18-24 May 2020 and the theme this year is kindness.

The Mental Health Foundation is a charity that works to prevent and raise awareness of mental health problems.

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