Monthly Archives: July 2020

Lewisham BAME MH Carer Forum June 2020

10177241_747738765268892_5890142387668348507_nIt has been a busy month for July and I have been meaning to update on my Lewisham BAME Mental Health carers forum for June. I have to honestly say I have finally gotten around to do this, even though the July BAME forum is tomorrow. Lets first give a quick introduction of this forum.

I can feel it can be difficult for patients to know about what mental health services are in place in a certain area, it can be even more difficult for carer’s to get an idea what is out there, especially if there are forms of mental health stigma. but this move in BAME community, sometimes the BAME community can go through a hard time and that does increase mental health issues as opposed and also problems with services that can be seen that we need to make made aware of and how we can work together.

With these issues it helps to have a forum that allows engagement from services. That’s because services change often, especially health services, mental health services and Local authority services. The forum also allows a chance for carers to get some forms of education to learn from those services.

For the June forum we had my MP Janet Daby attend, along with Josephine Ocloo who is a Researcher, and also ‘Patients for Patient Safety Champion and also on the National Patient Safety Steering Committee for NHS England. We were also joined by Donna Hayward who is SLaM’s Service Director for Lewisham mental health services. We also had Sophie from Healthwatch Lewisham who is the patient experience officer, talked a bit about her role as in to listen to residents on their views about health and social care.

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MP Janet Daby

Janet thanked us for the invite to the forum so that she can update members and hear from BAME carer members. She was happy to see lots of familiar faces on the forum. Plus she felt that the forum was important for carers from the BAME background to be supported through engagement from services.

Janet certainly agreed that there can be stigma in the BAME community when it comes to mental health sometimes there is an embarrassment or shame around stigma or sometimes even people don’t really recognize or or get a sense of how they will and and can be supported. Janet Daby updated the forum to also speak about the Coronavirus where Lewisham has provided any support. Janet mentioned that she recently met with the chairman of SLaM sir Norman lamb and is are going to have more ongoing conversations in futher meetings.

Janet feels there’s so many things that she has spoken to him about and but the main one that I spoke to about was the lack of of professionals in engagement with family members where somebody has a mental health problem. There is an issue regarding the lack of empowerment for family members to be involved with the care and the decisions of their loved ones where they’ve got mental health problems. She feels health professionals should be embracing that relationship, rather than being surprised it exists, and also rather than making decisions without having those conversations with those family members. There needs to be more training on getting health professionals to engage well.

She has lots of concerns around where people live in overcrowded situations or where people live in unsuitable conditions and how that will exacerbate the feelings of them being isolated, just as carers are isolated during the coronvirus infections. With all this problems it is no wonder that mental health issues are incresing. Janet mentioned she was also concerned how young people were coping during this difficult period. She felt hard for those people who are unable grieve for their loved ones when they haven’t been able to attend funerals or do their usual goodbyes.

She feels it is really important that when the government is looking at this and she will do her hardest to increase the voices of the BAME communities being heard. Especially in accessing the right type of therapeutic support. Janet mentioned about the £5000 application funding scheme, which was also advertised off her Twitter account where carer members asked her specific questions.

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After a while, we got several excellent questions from the carer forum. Where one carer member asked about if the government understands the difference between a worker and an unpaid carer. He felt the reason why he had to ask was because he never hears anything from the government to say what they’re going to do for the unpaid carers who are suffering in silence at the moment. Janet did agree more could be done to raise awareness to the government about carer identification.

This is not only a problem with carer identification but also BAME as there has been so many reviews including the McGregory review, the Windrush scandal review and others. Janet queried when will the government get on and work on the recommendations of these reviews. She felt that we do not need people’s sweet words or their facial expressions of concern that they really care about the community, because if they cared about our community, then they will put these recommendations in place. She feels there is a lack of BAME people being at certain reviews and it is so important BAME communities keep telling their stories, but with these recommendations especially from MP David Lammy and others hardly any get passed.

Going back to my Lewisham BAME forum, I am open for patients and service users attend and we got a good question from a service user who does peer support on some of SLaM wards. She feels that patients get a bad deal when it comes to their ward rounds. A good example is there can be so many people at those ward rounds and that there is a misrepresentation of that service user needs. There is a lack of patient advocates to be there as a voice to represent them and not for other people to tell them.

Another carer talked about her mother from a different culture and background and felt that while her mother is in hospital, there is some difficultly visiting her. Some other carer also from a BAME background spoke about the reasons why she feels the BAME community gets so many mental health problems she was also unhappy about the levels of BAME community at the front line contracting COVID-19.

Janet responded to the forums queries and questions and agreeing that the BAME community should not be pigeonholed and stigmatized with labels. Plus the problems of PPE not fitting BAME staff and the problems of poverty, which can lead to lower immunities. She feels BAME communities need more access to education, housing and especially health. She also feels there needs to be prevention of the police racial profiling of our community and that there is also a problem with the rise of the far right in the UK.

One of the service user members of the forum stated that she was at another meeting yesterday and felt that we need to stop thinking as a separate unit. We need to think of us as a big community, and this is some of the things she find as a service user as well, is that there’s that separation of hospital care and community care. She would like to see those two come together as a whole and that the care that you can get to can be continuous and not separated.

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Dr Josephine Ocloo

We next had Josephine Ocloo speak about her research and then Donna Hayward from SLaM give the forum members service updates. Donna felt it would be appropriate to talk more on BAME cultural awareness. Donna mentioned that although SLaM knows that a lot of their patients, carers and staff. She feels like there could be more discussions on what what it’s like to be black, or from a BAME background.

She want people’s experience of mental health to be different, but Doona feels unless we have the conversation about diversity in a very open way, SLaM may be in a position of being defensive and still feels we are not getting it right for our community.

There is a problem in the NHS, that we revise strategies and that we talk about research, where lots of things that the forum raised she recognised. Donna mentioned she recently had a meeting with a commissioner who said that SLaM needed to do a research project. Donna felt that we do not need to do a research project. What SLaM needs is to know what the issues people tell us and how those issues start. We get don’t don’t spend 10 grand doing a research project and spending 10 grand putting something right.

Mental health tends to be thought of as it shouldn’t be. Mental health is across all SLaM’s services and sometimes SLaM don’t always get it right. Donna mentioned that she is one of those people who’s very vocal about that. She feels mental health is in our community across our community and across our services, including our GPS, including social care, including education

This is the update for June’s Lewisham BAME MH Carers forum

Caring through stigma

 

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Hello fellow carers. Every so often during writing blogs off my carer forums, I tend to write about the carer experience. In this particular blog I want to write about stigma and make unpaid carers aware of what stigma is and the damage it can do.

Just to make things clear that when I talk about carers, I am not talking about NHS workers or nurses. I am talking about people who care for someone severely unwell in the family, or perhaps caring for a close friend. I am not saying that some in the NHS are not caring for someone in the family, but I want to cast the net out and bring in those whose identity is blurred away.

This blog site focuses a lot on mental health carers, so I do not want to stray too far from them. As a reminder a mental health carer is someone looking after a person with mental health needs. This could be a form of psychosis, bipolar, depression, Post-traumatic stress, OCD and so on.

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Unfortunately with mental illness, stigma does strike at the heart of those affected. The stigma can affect both carer and ‘cared for’. Many may ask what is stigma?

The Shame

It does not take long to google the word ‘stigma’ and see it linked to mental illness. Stigma can involve many things, but often stigma is linked to mental illness.

Basically stigma is Fear and anxiety about a disease that can lead to negative attitudes and beliefs toward a person and their characteristics. This can be down to others not understanding mental illness be it a lack of education, awareness, fear or worst of all ridicule. With MH stigma, suffers of mental illness begin to lose friends, family support and can be ostracized from the community.

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The stigma often can hit the sufferers family and close relationships. Some in the family may stay clear from the situation leaving the most concerned to take on the carer role. Some in that family might even actively practice stigma and even then the sufferer of the illness might be stigmatised through their own illness as they will not engage with health and social care services.

Unfortunately it can be that the mental illness itself can blur how the sufferer understands what is effecting them. It is as if the mental illness makes it harder for the person to come to terms with what they are going through.

When I was caring for my mother, I noticed over the years how many friends withered away, even some neighbours kept their distance. I myself experienced a lot of stigma as some laughed at me when they realised I was caring for someone with mental illness. During the early years my mother became sectioned often as she struggled to cope with medication and support. Many would see her taking to the hospital by the police or ambulance and would gossip.

The continued experiences of watching my mother go through the rotating door of the mental health inpatient ward took its toll and I got tired of trying to educate and explain to others on reducing negative views. At one point, even I kept away from my mother as she took out her frustrations on me.

With no where to turn, I withdrew into myself and battled stress, depression and anxiety and mental illness can be catching. With a strong carer focus, I managed to look after myself and spare enough energy to continue to look after my mother.

Would not have it any other way

Looking back at it, I can be proud as I would often hear many let that stigma drive away those close to them. I stood by my mother until the very end as a son should do, although I am aware that not all carers can do this and there is no shame in walking away, because sometimes health and social care cannot provide that support.

There was always a risk that the stigma and lack of support would push me to becoming the next mental health patient, but I had to be strong. I had to keep working to help in bills, providing care and support, holding the family together and setting an example to fellow MH carers.

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I will not lie, the experience of care has worn me down and I do not get too close to others. There are some things I cannot explain as yet because it will bring painful memories to the surface. I can say this though that time and patience does help.

If I had to go through it all again, I probably would and I most likely would have done quite a few things differently.

There is no shame

As an educational part of this blog post, I would like to mention there is no shame in caring for someone with mental illness. It does of course depend how unwell they are and you as a carer will need support. It is advisable get as much support from health services, friends and family.

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You of course will have to be strong when stigma comes your way, many just do not understand. Many do not realize that mental illness is very common as we all suffer from anxiety, stress, anger and depression. It does not take long to notice that a tip over the edge can lead the sufferer to severe mental illness.

I certainly have more patience with those who have mental illness and refuse to laugh and joke when I see someone in the street battling the illness. It can happen to any of us or those we are close to. There is no shame in mental illness and with the corona virus epidemic, society will have to get used to mental health because there will be a lot more to deal with.

Joint Southwark & Lambeth MH Carers forum June 2020

Maudsley_Hospital_Main_BuildingWelcome to the month of June joint Southwark and Lambeth MH carers forum.  I usually run this forum at the Maudsley hospital. As a reminder the carer forums are aimed at carers who care for someone with a mental health need. I run around 5 carer groups each month and most of the groups work towards engagement, co-production, involvement, education and querying about mental health and social care services.

The Joint Southwark and Lambeth carers forum runs online due to the corona virus. Carers from either Southwark or Lambeth will need a free application called Zoom either on their computer, laptop or mobile phone to attend the meeting.

For the June meeting we were Joined by Southwark Healthwatch, Lambeth Healthwatch, Lewisham Healthwatch and also Greenwich Healthwatch where they traded ideas about carer projects. We were also joined by the trustees of Southwark Carers, Southwark impatient carer lead and also a carer who is a carer peer supporter. Both SLaM Southwark and Lambeth advisory group carer members attended and we were also jointed by Cllr Jasmine Ali who is Southwark Council’s Cabinet Member for Children, Schools and Adult Care. In attendance was Cllr Danial Adilypour who is the Lambeth Cabinet Member for Health and Social Care and Finally the main speaker to engage with carers is MP Helen Hayes.

Coming off the back of carers week, the forum was interested to hear what Southwark and Lambeth council had been doing for carers in both boroughs. First we heard from Southwark Healthwatch from all the work they have been doing to highlight the situation unpaid carers face in the borough.

Southwark Healthwatch update on carers

Southwark Healthwatch spoke about listening to peoples experiences of health and social care and trying to make change to the wider community. Over the years Southwark Healthwatch spoke about the priority areas and one of them being unpaid carers. In 2019 their project on unpaid carers looked at surveys, focus groups and interviews with carers.

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Results of the project looked at the daily life of carers with themes being on qualitative experiences. The project looked looked at the Impact of caring, which was reported to be very extensive, emotional and intense.

Other findings were

  • Carers felt they were going on beyond the roles of caring – especially on care coordination.
  • It was noted some carers were doing 69 hrs of unpaid care each week.
  • Stress levels, tiredness a strain on carers Mental Health.
  • Financial situation under strain due to multiple levels of care.

Southwark Healthwatch looked at the support carers were getting through social care services, this became an additional challenge for carers due to chasing people on the phone. Bureaucracy led to isolation of carers. Carers reported back that interaction with social workers or GP was not always a positive about the experience. Many felt the levels of service was inconsistent, lacking support and empathy, which led to distrust of council provision.

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Carers did value one off support for benefits applications, carer assessments. Carers also felt activity groups were useful along with respite, but must be flexible. Counselling was hugely important for carers.

Carer members at the forum queried carer counselling services either from Southwark Carers, SLaM or Southwark council.

Southwark HW are going to raise this at Southwark Council’s “Carers Board”, hopefully the forum will get some feedback on this. The forum is worried about funding and accessiblity of counselling since Southwark carers lost their counselling service due to funding.

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Greenwich Healthwatch fed back that on young carers awareness day they visited some schools and wrote a report on the experience of young carers, they felt that young carers are not heard in the borough and will be learning from others on what could be needed.

MP Helen Hayes engagement with forum

Helen gave overview of issues raised from when she the last attend our forum back in November 2019 . Helen updated the forum on how COVID-19 affected both Southwark and Lambeth boroughs. She noted that COVID-19 has shone a spotlight on inequalities in Health and social care. Corona virus has impacted the community’s mental health due to lose of income and difficulties accessing food and medicine. Helen’s email inbox is hitting over 1000 emails a week due to the coronavirus alone

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MP Helen Hayes

She wants to take back views of Mental Health carers back to parliament and spoke how one of Labour’s previous election pledges was on increase of carer allowance. There is also a focus on the need for paid leave for carers, which they will continue to work on.

Helen spoke on how Carers assessments under carers act and how the Care Act a welcome reform, but was not supported by levels of funding. Helen mentioned that she is the Co-Chair of the All Party Parliament Group on Adult Social Care and they were working hard to reduce the fragmentation of the care sector.

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She stressed that both Southwark and Lambeth council have been working very hard to address those needs and although she has been MP for Dulwich and Norwood for 5 years, she felt that MH issues will rise due to the problems corona virus has impacted on the communities.

The forum raised the issue of care homes especially the problem of how COVID impacted them as many carers have loved ones in support housing or care homes.

I also asked Helen about involvement for carers at the highest levels, where Helen phrased the importance of “Nothing about me without me”. She agrees that those who are expert by experience should be involved in policy or carers be allowed to co-design and co-produce.

Update from Cllr Jasmine Ali on Southwark Council commitment to carers

Jasmine thanked Helen Hayes for her support when COVID caused so much distress in the borough of Southwark.

Cllr Jasmine Ali

Cllr Jasmine Ali

Jasmine was not a fan of the work Matt Hancock has done so far, but at least we are slowly getting in a better place. Jasmine noted that adult social care and carers are a big priority in the borough. She reported that there are around 26,000 carers in Soutwark alone, but she was proud of the work that Southwark’s Wellbeing hub, Southwark carers and older peoples hub were doing. Jasmine talked to the forum about Southwark’s future plans and that there will be a strong emphasis on advocacy, guidence and signposting.

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She spoke about the importance of SLaM’s recovery college and how a focus needs to look at increasing the caring relationship between cared for and carer. There are plans to Link carers with Universal services e.g. public health, learning and leisure and the developing work on Southwark’s Carers joint strategy, need assessments and the carers pathway board. She wanted to hear what are issues being raised from the forum.

Jasmine spoke on the importance and need for the Ethical care charter and carers charter, although a lot of work has stopped she fedback that by the end of June things will start up again.

Update from Cllr Danial Adilypour on Lambeth Council’s commitment to carers

Danial agreed with what both speakers raised at the forum and mentioned carers are a very important issue in the borough of Lambeth. There are big pieces of work from the boroughs “carers card” scheme which came out of Lambeth Carers Strategy. First part of the launch was actually off carers week 2020. The Second part of the ‘carers card’ launch will be at the end of the year, where businesses will provide a range of discounts to carers.

Cllr Danial Adilypour

Cllr Danial Adilypour

Daniel gave out stats and showed there are around 20,000 carers in Lambeth. He mentioned that the Lambeth carers card is not the end of what is being offered off Lambeth Carers strategy, there will be more to come.

Currently there is a helpline open during the corona crisis. Lambeth council will work on several strands being.

  • A&E services (the problem of people not accessing services due to MH), but will work with Lambeth’s ‘Living well network alliance’ to increase access to A&E.
  • The problem of Social isolation is another strand Lambeth is going to work on where they will develop a strategy.
  • Lastly Daniel stated that Mental Health will hit Lambeth due to the COVID situation, Lambeth will continue to engage with groups on this topic, especially the MH carers forum.

Carers from the forum were queried Cllr Danial regarding the SLaMs Lambeth hospital consultation. There will be wider plans over the coming years involved with Lambeth carers strategy to engage with forum.

Healthwatch Lambeth Update

The forum was joined by Lambeth’s Healthwatch Natalia Sali​​​​​​ who is their Engagement Manager. She Updated us on the 80 page report of Lambeth Hospital consultation recommendations.

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She reported that over the month carers were fearful of using services. So because of this, Lambeth Healthwatch put on an webinar event where Speakers from Kings college hospital and a GP from a surgery presented what services are available for users.

Consultations are online at least and Lambeth HW will expect changes to face to face appointments, but this depends on virus

Lambeth Healthwatch will continue to speak to carers, older adults and young people regarding experiences in care packages during pandemic. As of this moment Lambeth HW are runing webinar’s every 2 weeks, the latest one on pregnancy, which did interest a member of the forum.

Updates from SLaM and forum carer members

David Meyrick SLaM’s carer inpatient rep fed back on how SLaM’s wards were

  • Allowing visitors back on ward, but visitors need to respect social distancing.
  • Developing a ‘missing in action’ project on female wards.
  • Looking into wards becoming more family friendly during visiting hours.
  • Carers strategy is in a draft.
  • Webinar course at SLaM recovery in July.
  • How the Peer support groups were continuing to run online.

The SLaM carer peer support runs every Wednesday from 6 till 7 online, where the carer peer support updated the forum on how the carers group was getting along.

We also had Updates from Southwark Advisory group members on

  • Producing a video for SLaM website on what Service user involvement does
  • What can be learnt from COVID-19
  • Qualification courses for patients

Updates from Lambeth Advisory group

  • Richie QI peer lead asked the group on what patients expect from services
  • Met with the Head of Lambeth Alliance chair on regarding how their Covid-19 strategy would be developing.

This concludes the update for June.

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.

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