Author Archives: mmckenz11

About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

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.

greenwich healthwatch

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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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.

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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.

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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/