Category Archives: Lewisham BME Mental Health Carers Forum

Lewisham BAME MH Carer Forum February 2020

IMG_20200228_095949Welcome to the February update of the Lewisham BAME Mental Health carers forum. The forum is aimed at black Afo-Caribbean, Asian and other minorities carers in the borough of Lewisham, however I am happy for other carers in surrounding boroughs to attend. The forum is run from Bromley, Lewisham and Greenwich Mind centre under the arm of Community Wellbeing.

The forum is more educational and allows carers to discuss with mental health service providers any queries about services. A high majority of the BAME community use mental health services and some of the issues are specific regarding race, culture and even language. The issues are complex and deep, but discussions, forming relationships, education and working together is the way forward.

For the February forum we were blessed to have an outreach ad support service engage with the forum. The service was called OASIS and they kindly provided a workshop for the members of the forum. OASIS is a mental health service for young people (14-35 years old), living in the London boroughs of Lambeth, Southwark, Lewisham and Croydon. They provide support for up to two years, for people struggling with experiences like hearing voices or feeling paranoid.

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OASIS ran a workshop for the forum, which was on ‘Psychosis and Unusual Experiences’. Many members of the forum in the past often asked for more education on psychosis. The members wondered how Psychosis affects the person they care for. So I was really glad that OASIS stepped in and provided a lovely workshop for us.

I was amazed to see that OASIS came along with a patient to tell her story, which I thought was inspiring and left a great impression on me. It showed there is always hope no matter how difficult things became.

Back to the presentation and workshop. OASIS talked us through how broad the definition of Psychosis really is, but they broke down that term into a number of factors.

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The presentation looked at how sufferers could get

  • Confusion and changes in thoughts
  • Hallucinations
  • Changes in speech
  • Loss of motivation
  • Feeling like something controlling them
  • Experiencing upsetting thoughts
  • Paranoid thoughts and ideas
  • Deterioration in physical health
  • and a lot more.

This is not to say those who experience psychosis had all of the symptoms, but they are common among those affected by psychosis.

The presentation moved on to explaining the Early warning signs. This part of the presentation was so vital for carers as not all carers are alert to when someone if beginning to relapse or fall unwell.

Some of the signs were.

  • Anxiety
  • Irritability
  • Anger
  • Mood swings
  • Sleep disturbances
  • Appetite changes
  • Memory and concentration problems
  • Withdrawal

Again, its not like the person experience all the signs, but maybe some occur when the person becomes unwell. These early signs then eventually change to more difficult experiences shown below

  • Changes in perception – seeing/hearing things
  • Paranoid or suspicious thoughts
  • Unusual thoughts
  • High sense of threat
  • Change in behaviour and functioning

So eventually the above then leads to full blown psychosis. I was amazed how well the group explained things so easy and I wished more members turned up to view the talk.

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It was not always talking to the forum, we also did some fun quizzes to test our knowledge. Then we heard from the service user experiences. There was many thought provoking questions from the forum members which centered on cultural awareness and understand, but I still feel that the BAME community must also make steps to engage with services and not wait till someone becomes so unwell that they is no choice but to provide MH care.

No one likes things being done to them, so there must be some focus on what services we can use before we get into a situation where services are forced on us.

More information on OASIS can be found from their website which is https://www.meandmymind.nhs.uk/

I have decided to advertise the event off eventbrite as well as getting support from SLaM to place up posters on their wards and out in the community. I cannot thank SLaM enough for being very supportive of the forum and continuing to engage with the BAME community.

For those who may not know, the Oxleas, SLaM and SWLSTG Mental Health trusts are working heavily with the community to update what they are doing for their BAME staff. I am glad the services is using this forum to engage with the community since diverse communities often query about staff and not always the service themselves.

To book for March forum, the link is below.

https://www.eventbrite.co.uk/e/lewisham-bame-mental-health-carers-forum-tickets-6270105053

This concludes the update for the February Lewisham BAME MH carers forum

Lewisham BAME MH Carer Forum January 2020

enteranceWelcome to the January update of the Lewisham BAME Mental Health Carer forum. This is one of the 4 carer forums I use to help engagement between unpaid carers and mental health or even health services. I feel if patients and their families are at the heart of health services, then there should be some form of engagement, involvement and influence.   The forum is run from one of the Bromley, Lewisham and Greenwich MIND offices with support from Community wellbeing.

The Lewisham BAME Mental Health carer forum is fairly unique since its aim is to generate understand of mental health pressures on Black and Minority population in Lewisham and sometimes in other boroughs. Since afro-caribbean are high end users of the mental health services, the forum helps in understanding some of the issues.

We hope the forum can shed light on the following.

  • Education regarding mental health in the BAME population
  • Reducing stigma from both psychology, psychiatry and from families and carers
  • Working on culture and diversity and trying to understand that in partnership with our local mental health trust.
  • Raise the profile of BAME families and carers in the mental health system.

The are more points the forum tries to cover, but that can be for another day. I would like to mention BAME issues are some of the most complex and challenging aspects in mental health, so even then a forum cannot possibly solve those issues, but it can provide a platform of understanding, providing compliments if things are working (and some things do work) or querying if health or MH services are failing families and carers. The forum is particularly interested in what consultations or involvements are taking place in the borough.

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For the January forum Isabelle Ekdawi SLaM’s Trust Advisor for Family Therapy presented to us about Open Dialouge and Trauma Informed care. I was very greatful Isabelle took time out to engage with the members and the BAME community.

To touch a bit more about Open Dialouge.

It is a form of therapy that includes patient, clinician and carer, with less emphasis on the medical model and treating those who use the services as equals.

As far as I can remember Open Dialouge has 3 or more aspects to it, being

  • Philosophical and ethical approach to distress
  • Psychosis seen as response to difficult life situations
  • Avoiding the ‘them and us’ relationship and using just ‘us’
  • A Way of organizing services (which can be a challenge
  • Community based services, networks engaged from beginning, ‘open’ decision making.
  • Use of particular type of therapeutic conversations

Isabelle mentioned some NHS Mental Health Trusts are using Open Dialouge in their services, one of them being North East London Foundation Trust. Off NELFT’s website it explains “Open Dialogue is a model of mental health care which involves a consistent family and social network approach where all treatment is carried out via a whole system/network meetings, which always include the patient”.

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There has been much criticisms of the recent medical model for mental health where there has been a lack of psycho-therapy and too much emphasis on medication. The outcomes for the patient can be very poor and thus more beds are often needed as patients fall through the system time and time again. Open Dialogue aims to challenge such outcomes, but it all starts with education.

Isabelle explained the Overview of the service model to the forum.

  • Treatment team at the time of crisis
  • No separate professionals meetings
  • Planning together becomes the treatment
  • Different voices and dialogues coming into conversation
  • Feed into other treatments – such as individual therapy, social work, family therapy

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There was lengthy discussions on the method, but if anyone is interested they can check out the links below for more information.

http://www.opendialogicalpractices.eu
http://podbulletin.com/
http://www.developingopendialogue.com

The Lewisham BAME carers forum was also joined by Juliana Onwumere who does research over at the Institute of Psychology, psychiatry and Neuroscience, she is a senior lecturer and is very inclusive when it comes to families and carers. She wanted to speak to the group about carer related research that might be of interest.

Each member of the forum gave their opinions, but for me. I feel if we can collate some of the major research done from the past couple of years on families and carers, that would be a good start. Which is why I joined researchgate.net and checked out past research papers. My particular interest is how far did the Care Act 2014 affect carers

If anyone wants to see a list of research papers done on carers, here is the link below.

https://www.researchgate.net/search.Search.html?type=project&query=carers

Please join research gate and contact the researcher to get such papers. I am not a research myself, but I do value research and how it uses evidence to initate change, no one can deny evidence and it can be a strong tool to pressure services or at least get services to understand someone point of view. It was that reasons why I engaged with IOPPN and I am hoping they do a lot more regarding families and carers. I am aware research can stall often, but it is worth doing if it can help in change.

Lastly we had updates from Juliana Frederick-james who is the Community Development Services Manager for Oxleas MH Trust. I have to put a lot of praise on Oxleas for engaging with both the Lewisham Carers forum and also the Lewisham BAME carers forum.

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I am aware Oxleas MH NHS trust covers the boroughs of Bexley, Greenwich and Bromley, but Oxleas often try to support engaged carers especially at groups and forums.  I have been impressed with Oxleas so far, although there is always work to do.

Juliana updated us on how Oxleas is looking to track carer groups and engagement forums, I am hoping that Oxleas engages with BAME projects and one of the comes from the Royal College of Nursing in regards to BAME staff development.

All this is integrated from the South London Partnership, which includes South London & Maudsley and also South West London & St Georges NHS Trust.

I feel BAME projects should not just only come from queries of families and carers but should look into the impact of BAME Mental Health staff and how they relate to diverse communities.

This concludes the January update for the Lewisham BAME MH Carers forum.

Lewisham BAME MH Carer Forum November 2019

Carers Nov2019Hello again!! Here is the Lewisham BAME Mental Health Carer forum update for November. This is usually the last forum I run out of all the 4 forums per month. The forum is quite unique as the other forums promote mental health carer inclusion and awareness in the other London Boroughs, but this one focuses on Black Asian Minority Ethnic queries. BAME carers and service users suffer a whole different set of issues in regards to mental health services. Most are complex, cultural and historic, but there MUST be some platform for important parties to discuss, network and work on these issues.

Another thing different between this forum and the 3 others is sometimes this forum is a mix of patients and unpaid carers. I often try and leave space for the Service user Rep or chair to update the forum.

Who Attended and spoke

For the November update we had a discussion from Pharmacist Della Bishara in regards to medication and its affects on the patient and how unpaid carers could and should be involved.

We also had a detailed presentation from Rachel Ellis who is from Table Talk, which is a new initiative that aims to help inform senior residents throughout the borough, with the help of volunteers. Table Talk provides leaflets, information and a table in order to engage with the older population.

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We were also joined by a number of unpaid carers and patients, along with a representative from Lewisham Homes, plus Metro’s Representative who provide one-to-one counselling for people who identify as LGBTQ and/or those experiencing issues relating to diversity, equality and identity. We were also joined by Lewisham CCG Engagement Teresa and also Natasha from Greenwich Carers who I approached to set up some carer groups. We were also joined by the rep from Community wellbeing from BLG-Mind who I will also bet setting up a peer support group.

On Medication

We had a very lengthy discussion on medication with Della. Many questions from the attendees she took away to raise at SLaM especially in regards to clinical trials and reporting on side affects. Carers need to be involved because of the patient might not always be able to advocate for their need, especially if dementia takes hold. I raised with Della if there were studies looking at medication effects on BAME groups and if there is a SLaM trust wide forum that engages pharmacist issues.

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It was mentioned that Lewisham Integrated Medicines Optimisation Service (LIMOS) is working in improving medication safety for older people. Basically LIMOS is integrated across the hospital, local care homes and community settings, which means that, if a care home resident is admitted to hospital, or vice versa, there is a seamless approach to managing medication.

As with the psychiatrists bible being the DSM, the pharmacists have an important book, that being the British National Formulary (BNF), the book is not easy to get hold of and is the UKs pharmaceutical reference book that contains a wide spectrum of information and advice on prescribing and pharmacology, along with specific facts and details about many medicines available.

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Della discussed the BNF in detail and how it can help pharmacists, which the forum played close attention to. The forum also discussed the issue of miscommunication of medication between hospitals, covert medication and the issue of control & release medication.

Table Talk presentation

After the discussion with the pharmacist, we moved on to another topic regading older ages people. This was the Table Talk project, which was presented by Rachel Ellis. Rachel has been an outstanding promoter of senior citizen’s causes throughout the borough of Lewisham and has visited a large number different venus in Lewisham this year alone. As mentioned before Table Talk engage with the public on raising awareness of activities, information and support for senior citizens. This is specially important due to the population is ageing as we all are living longer.

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Table Talk work closely with Lewisham council and with Age UK. The Lewisham BAME MH carer forum were shown several leaflets, which can help older people in regards to meter readings, warm homes, fire alarm checks and transport. We discussed how isolated older people can be in the community as Rachel described more information and leaflets.

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Carer led Support Groups

Lastly for the Lewisham BAME MH Carers forum. I discussed the importance of carer-led peer support groups. I will be setting up several carer support groups in a few boroughs. Usually the forums are strategic and engagement focused and there is not enough time to hear carer stories. In fact carer support groups are meant to feed into the carer forums for empowerment purposes, but there were only a few carer support groups in the borough and none carer-led, which means there is not much motivation for carers to connect with each other.

I will be setting a BAME and a general MH carer peer support group with the help of Greenwich carers for that borough and I was so glad Greenwich carers engagement and community officer (Natasha) came along and support me at the Lewisham BAME forum.

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This will be the same for Lewisham as we will work closely with the CCGs. The forum talked about how they felt about the Bromley, Lewisham and Greenwich Mind peer support group event that was held on wednesday the 27th over at York Hall in Beckhenham. We are very glad that they are able to fund that startups of the groups, however I pressed that we do not really need the funding, it will be the passion, drive and connection that can help, not to say funding will not be helpful.

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With Lewisham CCG engagement, the forum has been aware of NHS England’s long term plan and we have made it clear they need to involve patients and carers in that plan. The good news is that the NHS England’s long term plan is beginning to take shape and involve us, but no matter what I do, I want to connect with carers and make them aware that the health system is trying hard to involve them. I am not sure about the social care element, but at least with NHS England, there looks to be some very good and exciting projects coming our way.

BAME Carer experiences Research

As promised I promoted a trainee psychologist’s study into African Caribbean experiences of supporting an individual with MH needs in a forensic setting. She contacted me after reading my blogs to see other researchers were engaging with forums about their own research. The researcher feels there is not enough literature or research papers detailing such experiences and Lewisham CCG will follow this up with the trainee Psychologist studying at the University of East London.

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As usual I thank Kelvin (one of the proactive members) for setting up the talk with the pharmacist.  I also thanks Community wellbeing and BLG Mind for hosting the Lewisham BAME forum and thank Greenwich Carers for the support they have given me and look forward to exciting projects ahead.  I would lastly like to thank Lewisham CCG engagement officer (Teressa) and the other CCGs for engaging with the Carer forums and I am very impressed with the plans they are looking to involve us in.

This concludes the update for November and I will be preparing for the groups with the support of Oxleas and Greenwich carers.

Lewisham BAME MH Carer Forum August 2019

me_edited-1Welcome to another update from an unpaid carer who is involved in their local mental health trust and communities. I often try and engage with communities as much as possible, be it through running carer strategy groups, giving my views and engaging with events.

For the August Lewisham BAME Mental Health Carers forum, we focused on Patient Participation Groups and also updates from the South London and Maudsley Inpatient Social worker over at Lewisham hospital.

The Lewisham Black Asian Minority Ethnic Carers group is one of the 4 groups that not only focuses on carers, but makes a distinction on their background, culture and ethnicity.

BAME groups are more likely to experience stigma and distress due to cultural interpretations and systems set up or designed that does not take into account BAME communities. Lewisham is certainly one of the most diverse London boroughs around so it really helps that communities get together to discuss and educate each other on issues regarding health.

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The Lewisham BAME carers forums also accommodates those using services, but there still needs to be a drive to engage with more BAME carers who are very uncertain of their role and perhaps lack peer support and identity.

The carers forum runs from Lewisham, Bromley and Greenwich Mind under the Community Wellbeing umbrella.

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Lewisham Community Wellbeing is delivered in partnership with several other local charities and public sector organisations. We have been very lucky to get the support of Mind who probably have a lot on as it is and there will be some very exciting community projects coming up soon.

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We have around 45 to 50 doctor’s practices in Lewisham and I was fortunate enough to have the chair of one of the largest doctors practice in Lewisham. Alexandra Camies does an immense amount of work engaging with patients for the doctors practice she helps with. The doctors surgery is also a member of the National Association Of Patient Participation or N.A.P.P. I have always said to carers and patients that doctors are usually the gatekeeper to services, if you feel your doctors practice could do more for you or the community, perhaps look into how their Patient Participation group works.

So what is a PPG anyway? What do they do?

  • PPGs offer patients an opportunity to be involved with and support their local General Practice. For the South Lewisham Health Centre. Here are some of the following things that PPG involves.
  • Patients wishing to join must, in order to comply with General Data Protection Regulation (GDPR), complete an application form.
  • They currently have a committee of 8 patients, including aChair and Secretary.Committee members are provided with written details of their roles, responsibilities and key relationships.
  • They have the assistance of the surgery Patient Liaison Officer, who attends each meeting and provides us with any help needed at the surgery.
  • They have a GP representative (usually a partner), and the Patient Services Manager that attends the meeting.
  • All members are invited to general meeting, held quarterly, and asked if they have any agenda items to put forward for discussion.
  • Members that are unable to attend are able to have a virtual input via email. Virtual members are sent copies of the minutes, which are also placed on the practice web site for all to view.
  • Committee members take on a little more responsibility at the South Lewisham PPG, taking a part in organising events or projects, or helping with various admin tasks. Committee meetings take place as and when needed.
  • Members may be being asked to help out for such things as events.

Take note not all doctor’s surgeries are alike. Some do not have the resources to have a PPG, but it does not stop patients from helping set one up. I explained to the forum that your doctors surgery is only as good as the community that cares for it and uses it.

How can a success for Patient participation group operate?

  • The PPG should try monitor progress against objectives
  • Publicise their successes
  • Involve people and not that would mean patients, especially those whose voice is not often heard.
  • Learn from other groups, usually other PPGs hence the PPG Network.
  • Build on and work with their network of health and wellbeing groups and organisations.
  • Expand activity where possible
  • Make sure to review our objectives regularly

There are only a very small part of what a PPG doctors surgery should work towards. Alex gave the group an excellent presentation and we both learnt and picked up ideas from each other. I reminded the group that they could start their own projects and inquire about their local doctors patient participation group.

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If you want more information about South Lewisham GP Practice, check out their website below.

http://www.southlewishamgrouppractice.co.uk/

Next up was Errol Chambers who is the social work for the Lewisham Hospital Ladywell unit. It was great that SLaM engages with the BAME forum, because I have always stressed the the forum represents empowerment when we form as a group. If SLaM staff recognise this, then they can support us, although we try hard not to be antagonistic. Errol gave us a choice on what information the group would want be it on benefits or on how the Ladywell unit is operating currently. The group wanted updates on the ladywell unit and we discussed changes and progress regarding patients experience of the mental health unit.

Lewisham CCG was mentioned quite a lot as they invest in the services and are keen to see if the hospital is working to the best of its abilities. Many members pressed for a relationship with the units, but also felt that staff development must be key as a good quality service. This is mainly down to how staff engage with patients and their carers.

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At the end of the forum, I updated on the planning meeting for Lewisham CCG’s stakeholder event and also for Lewisham’s Carers conference requested by my MP Janet Daby who is a carer herself. I also pointed out that the Lewisham HR lead will be at the BAME forum for September. I have asked we are updated on the following.

BME staff engagement – What else is happening to engage with BAME community.

Plus small updates on the following.

  • SLaM’s Health and well-being strategy
  • SLaM’s Talent management programme
  • The South London Partnership collaboration (South west london & St georges, South London & Maudsley and Oxleas NHS Trust)

Plus an update on whats been done for staff to tackle.

  • Equal opportunity for career progression
  • Violence
  • Bullying & harassment
  • Discrimination
  • Stress
  • Flexible working

I guess as a carer, I do not ask for much. Still, I mentioned to the group…knowledge is power.

That is the August update for the Lewisham BAME MH carers forum.

Lewisham BME MH Carer/SU Forum July Update 2019

965946_fa217b70Welcome to the July 2019 update of the Lewisham BAME Mental Health carer forum. The forum is one of the 4 carer strategy forums I run in the community and has a focus on BAME carers and sometimes Service user issues. As a reminder, the London borough of Lewisham is a diverse community, with many health and wellbeing challanges, but also some successes.

Although it is good we have carer support groups, there must be a physical platform where families and unpaid carers can come together for empowerment purposes. Carers should have a right to have a say about Health and well-being services. For the July Lewisham BAME Carers mental health forum, I had to run it earlier in the month due to a meeting I have at the end of the month.

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Usually the forum would be packed, but a lot of members had sent apologies and this is one of the reasons I have blogged about the forum as a way to report back to members who can then feed into their networks.

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Lewisham BME MH Carer/SU Forum September Update 2018

965946_fa217b70Here is the September update from the Lewisham BME carer/SU forum. This is one of the only carer forum, which Focuses on carers from the Black Minority Ethic Community, mainly Afro Carribean, but not strictly.

For this update we were fortunate to have the Lewisham HR lead for mental health staff attend and brief the forum. As a forum we did not know how much the HR lead has to do, which is quite a lot!! The fun runs from the Family Health Isis centre over in Lee.

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Lewisham BME MH Carer/SU Forum August Update 2018

Welcome to the latest update of the Lewisham BME MH carer/SU forum for august. This is the first time that the forum took place in the evening, so to allow other carer members Who cannot always attends during friday morning.

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For the August forum, we hoped to have the Mental Health Act officer attend and give a presentation regarding the Mental Health Act and how south London and Maudsley were going to adapt to the latest changes to the mental Health Act. Unfortunately he could not make it, so we decided to discuss south London and Maudsley carer strategy.

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