Telling your Carer’s story

Fotolia_73087289_XSHello, everyone, welcome back to another carer blog from former mental health care Matthew Mckenzie.

This time I am writing my book about my caring experiences. The book is soon due for release. I say probably about two weeks time or perhaps the end of next month. I certainly will release it really soon. I have titled my book “A caring mind” but I don’t want to talk too much about the book. The book involves a lot of things and I’ll be doing In more blogs about the book, due to my experiences of being a carer over the years.

This particular blog is about telling your story as a carer.

To watch the video about telling your story as a carer, see below.

One of the chapters in my book is about “my story”, which is chapter two. I also explain the reasons why I took on the caring role for my mother, plus also helping my brothers. I also explain what the things I experienced and I explain a bit about my carer story journey and how it changed over time.

A few things I want to point out is that when you tell your story it shines a spotlight or at least highlights specific issues. If you tell your story as a carer, it’s a way of forming connections to those who are listening to your story, this being other carers.

I find it’s a way of release, when you’re telling your story, especially if your carer’s journey was very difficult. When you just want to tell others “This is what I’ve experienced” or “This is what I’ve gone through” then you’re sharing it with other people.  It might not even be a difficult journey, but it is a way of releasing that out there.

Giving help

There are other main reasons and why it’s important to tell your story as a carer. I think probably the most biggest reason would be that you’re actually educating others. Now, I’ve mentioned before that you would be more likely be telling your story to other carers. In the past when I’ve told my story, and it could be at events or conferences, I found it was a way to educate not only the audience, but within the audience, you could have other carers and pacifically health professionals, those who provided health and support for your loved one or the person you’re caring for. So you’re educating the professionals via health or social care.

Now I’ve looked around as to why it is really important to tell your story as a carer and I’ve come across a report or document released in 2015. It’s came from NHS England website.

And basically the title of this document is “Using stories to improve patient carer, and staff experiences and outcomes” It mentions stories of staff, patient and caring experiences, and journeys through their health system enables NHS to redesign and improve care, according to the patient’s needs are the carer’s needs, where every step of the patient journey is examined and improved.

Reasons to tell your carer’s story

The whole aim of telling your story in some sense would be to improve how the health system works how local authorities provide carer’s support to carers.

When health and social care organisations do events, they want to look into what happened due to a serious incident or a death. They want to improve the approaches or systems regarding complaints or what worked well and what didn’t. They would look at perhaps this is a very good example would be a promotion of service perhaps in a ward or in a GP practice or surgery.

They will display information leaflets on what is happening in a particular service and a good way to promote the service is to have a carer or patient tell their story at that event. But there are many other reasons in using a story to improve the outcomes and redesign or improving health care, health and social care systems.

How you can form your own carer story?

You have to start somewhere. And the aim is to get that story out. Now, what I was told in the past when I was caring for my mom is to perhaps do a journal perhaps everyday if you can, or maybe once a week and how things have been developing because you can look back and look into that journal say, Okay, I tried this, it didn’t work out. It was kind of trying my out caring role and checking what is working.

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When you do a journal, it wasn’t really about to form a story. It was about to keep an eye on if anything goes wrong and you can provide evidence and it can help in writing a doctor’s letter, if there’s a particular issue or symptom that the person you were caring for is suffering, but it can also be used to form your own carers story.

Where can you tell your carer’s story

I want to talk about really where you would want to tell your care story. Now I found the easiest way that I, in the past have told Mark hear his story was probably at NHS carer support groups, because what would happen to your support group is that they would speak to each carer at that group and say you say to them, how things going along for yourself. So I think that’d be an easy way of building up the confidence to tell your story. Another way if you have a fair bit technical knowledge, is there’s no reason why you can’t develop an online video on YouTube.

A good way to tell your story is at events. As in conferences, promotions, especially at mental health trust events. When I was caring for someone using mental health services. My local mental health trust put on carer conferences or carer events, or even mental health events, and they would invite a carer, to tell their story, or even at board meetings, or NHS training courses.

They would invite carers to tell their story and as a way of co-production and getting involved. Another way would be to blog, your story. If you have a website or blog site, there’s no reason why you can’t blog about your carer story. Lastly you could immortalize your story in a book, but be aware that it’s important to have some aspect into confidentiality when you tell your story if the person is still alive or if there’s others involved in that story. Please try and think about confidentiality unless you agree with them that you have to mention them in your book or in your story.

Conclusion

In conclusion, you know, I’ve noticed Carer’s Trust and other major carer’s charity in the UK encourage carers to tell their story. I don’t think even matters even if you’re a carer or former carer, it’s always good to try and tell your story. never tire of telling your story again because it does educate others, and it’s a way of telling others about your identity, your carers identity, and has been a main part of your life.

Lewisham BAME MH Carer Forum July 2020

enteranceWelcome to the July update of the Lewisham BAME mental health carer forum. I’ve been doing this forum for many years now. As a reminder I run carer forums aimed at carers who are looking after those with mental health needs challenges or mental illness.

These forums are just a way for carers and families to get educated in regards to mental health services, or local author services. This forum is specifically aimed at those from the BAME community, the other carer forum I do is just more general mental health carers.

The BAM community have two specific set of issues Hence, the patients may end up using community servies, you know, high secure mental services. So that was the aim to sort of get them to have have an idea about the services created them, see what’s working see what isn’t working. For the July Lewisham BAME ME carer forum we have the Care Quality Comission (CQC) attending, plus regular carer members, along with Oxleas’s Community Development Service Manager and BAME Staff Network Chair. We also had in attendance SLaM’s peer support project lead and Damien Larkin who is a nurse who works at South London & Maudsley developing BETH the online patient health recording system.

The forum was also joined by Bromley, Lewisham and Greenwich mind Peer Project lead who offers support coaching up to £250 funding or people to set up peer support groups in their community. This is to help peers around mental health and well being, especially during this period of lockdown, but also beyond supporting people within the community around their well being and mental health.

Lastly the forum was also joined by Abby who works for lesbian refugee migrant network. They are one of the partners in the community well being service she is also the Community Engagement Manager delivering culturally mental health services.

Although the forum covers mainly Lewisham, we welcomed a member interested in BAME mental health groups and she is a Mental Health well being practitioner who also provides low level mental health support for children/young people under the ages of 25, vulnerable people going back into employment and business startups wanting mental health support.

CQC Presentation

To kick off the forum the CQC spoke about their role and answered questions. I invited the CQC down because I wanted carers and patients to develop more of a relationship with the CQC rather than the CQC engaging with users of services when inspections of services arises.

Quality-Care-Commission

Natalie Austin Parsons who works at the CQC meaning Care Quality Commission as an inspection manager spoke first as 2 CQC staff were present. Natalie was handed the role of engaging the forum because the previous CQC staff member Emma Mcfarlene only works in the directorate of adult social care, so they would inspect residential services for MH/LD/autism as well as nursing and residential homes and domiciliary care agencies. Emma suggested Natalie engage with us since Natalie works in the hospitals directorate who inspect in-patient and outpatient mental health services

Natalie was also joined by Susan Shamash who I have known for many year, were Susan attended my Lambeth Mental Health carers forum when they last inspected South London & Maudsley.

Natalie was kind enough to answer the previous queries I sent her before presenting to the forum.

The first question was on how does how does the CDC engage with slam? And how does it inspect and slam so

Basically they have a named inspector within the London mental health team. Plus they have a named inspection manager within the same team, that being herself. So we meet with senior staff within the trust regularly throughout the year, every two to three months. Face to face it was before COVID they generally would have those meetings at about 2 and or 1 and a half hours. The CQC would talk about previous action plans. So when the CQC came last time, they asked SLaM to improve this.

The CQC also get any kind of information or intelligence from absolutely anyone in the public who contacted them and if the CQC are concerned they will contact them immediately over email or phone.

The CQC use such information to see what’s going well, what are SLaM celebrating at the moment? What are SLaM working on that they they feel really proud of. And that’s really important to remember that there’s lots of things that could be improved in every trust, but there are also things that they’re doing a great and that’s how often the CQC tend to meet them face to face.

The CQC usually have contact with SLaM’s the director of nursing and director of quality. It’s only half an hour meeting every those every two weeks, but there’s a lot of turning in for information.

The CQC also have focus groups throughout the year if there particular errors or teams that the CQC haven’t heard from them for a while, or they want to hear what their improvements are while they’re doing well. The CQC will invite them to attend, but it can be really tricky, as Mental Health staff are really busy and realistically, who wants to go to a CQC focus group sometimes that’s not everyone’s first choice activity.

There will be some changes in how the CQC inspects SLaM due to a change in methodology. The CQC used to do a lot of engagement just prior to an inspection period, but now we’re looking at trying to spread that across the year rather than all in one concentrated amount.

The CQC respond to the first set of questions from Carer members 

The CQC gave the forum space to question them about their first response to my query. A carer member noticed a criteria that caused problems due to getting access to mental health services. The carer felt it meant that less people are getting services. Therefore, you could argue you’re going to get a better output because you’re dealing with a small amount of people getting access via MH service from their GP, which could lead to a false economy of patients quality of service within the mental health trust.

The CQC acknowledged the concern and stated it was a really important point. The CQC are always open and welcoming to any ideas. on how do you think that the CQC could do to help services improve.

The carer suggested sampling on how many people that got rejected for mental health services against those that was accepted. So to see within those within that range who they are, and then do a comparison, and see if there’s any within those samples of rejection and actually had similar cases.

The CQC noted that it was outside of what they would do for an inspection, however they are to happy to feed that back into their colleagues that go into GPS because the ones at this forum inspect mental health trusts only. This was a very important development as the forum is examining how GPs engage with mental health carers, especially if GPs are the first port of call for patients or carers during a mental health crisis.

Another question from a carer was about when the CQC come to South London & Maudsley how do they look for equality and diversity regarding carers? Because the carer has never seen you when the CQC show that in their report. The carer wanted to know if there is anything regarding carers, The carer also asked about queried that there’s never anything regarding carers or support on it. So how do you they show the quality regarding carers. This question was interesting since a mental health carer policy the Triangle of Care wanted the CQC to acredit such inspections regarding services to carers.

Again the CQC admitted that it doesn’t often come through in the reports very much even in the narrative. This is not only in slam but all the other mental health trusts, which the CQC will go away and report that to their team. The carer was also concerned about measurements of stigma and concluded that when it comes to mental health people have got stigma, especially the BAME community. If the BAME community can’t see anything from the CQCs report then they feel that you’re not interested. How can you be supporting us? If you’re not showing what you’re doing for us?

The third question from another carer member was a suggestion mentioning with regards to doing some measurements. Could the CQC not start with an existing data? Are they looking at historic data or working from the bottom as a starting point?

The CQC responded that this is something that they would do. The way they probably go about this is to have the mental health trust to do this. The CQC would ask the trust if they have the data? And if they don’t have the data, why do they not have the data? How do they analyze the data? And what are they doing with it? Have they made actions realizing that they could or couldn’t be doing something better? So certainly there’s work that the trust will have data that they can use to analyze this, but there may well be other areas that they could collect it.

The CQC present on my second query

The CQC responded to the forums questions and moved on the my second query I raised with them before they engaged with my BAME carer forum. The second query was on “How does the CQC engage with patients and carers during an inspection of a trust?”

The CQC presented that as standard when they come and visit a trust as large as slam, they divide services that it provides into something that the CQC would call core services. So examples would be adult inpatient wards. And slam have a number of those adult community mental health services, children, community mental health services, and substance misuse services if a trust provided. So those are examples would be wide across borders, and across all trust, and then the CQC write a final report for the core services.

There can be some difficulty if you are wanting to find out about a specific Ward or a specific team, and it can get quite lost in a report sometimes. if the CQC finds one Ward, or team that is doing particularly well or bad, then they will write about that in the report. But generally, across the trust this team, this type of service is doing well in this area or it could be improved in this area and then if the CQC need an improvement, they put it across the whole Trust.

Later on they inspect the trust about that improvement and in the report, the CQC have the five questions. So is it safe? Is it effective? Is it caring? Is it responsive and is it well led.

Experts by Experience

When the CQC come in with a team of inspectors, they are joined by professional advisors, who are currently working in that in that type of service in another range of interest. The CQC come in with experts by experience who have used that type of service themselves. The CQC do have people who are carers and who come in as the expert by experience as someone who is cared for a loved one with a mental health difficulty. Unfortunately the CQC don’t have many carers, the CQC have more people who have personal experience and the CQC would always welcome many more carriers to join that process as an expert by experience.

When the CQC come in they interview staff, they look at case records, they look at the environment, they interview service users. And the CQC do try to interview carers.

The CQC admitted that they think this is where they could do a lot better. The CQC request the contact details and the consent to be contacted by them through the trust, which the CQC think can be one of the barriers, they can’t just request a list of everyone’s names connected to services and then call them out of the blue. And so so that makes it a bit a bit trickier. Obviously, not everyone wants to speak to the CQC as well. Not everyone knows who the CQC are what they do. And that that again can be a barrier. The CQC collect all of that evidence and they make a judgement about specific things, you know, medicines appropriate training. So, that’s kind of an overview of how they do an inspection.

Inspection during COVID

Because of the COVID situation, the CQC are adapting the way they work at the moment. So they actually will give them longer time to spend talking to carers and people using services by telephone or maybe conferencing software.

The CQC then paused the presentation to give carer members a chance to raise questions on that subject. I won’t go into too much details about the questions, but they were very good regarding

1. How the CQC can gather patients and carers to hear abour services.
2. The problem of BAME carers worried about COVID-19 and how this will be captured in reports
3. More questions regarding sampling and data.

The CQC then presented on how well SLaM had performed during the last inspection and also responded on how well Oxleas has performed since Oxleas usually attend this BAME forum at times.

SLaM Peer Support lead presents

Next up we have the Peer support lead for the trust present on her role. Her focus at the moment is around making sure that we get more peer workers, working people, workers or people who have lived experience of mental health. And they are trying to make sure that we get peer workers working in all different departments of SLaM. This is so they can offer the lived experience and support people in navigating through the mental health service and navigating their way through recovery.

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SLaM have is what she mentions is a values based measurement, which means that they train peer workers to work to a set of values. Those values are the value of lived experience, developing safe and trusting relationships and strength based approach, anti racist, anti oppressive practice.

Training Peer workers

The peer lead continued that they train people and they do an eight week accredited training. They want to train people who have lived experience of mental health and who have used services. It’s really important to say that just because someone’s got lived experience, that doesn’t mean that they’re going to be good peer workers, you need experience to be a peer worker, and for having lived experience doesn’t make you a worker looking for loads of skills and qualities as well including communication, kindness, and the team working at able to support people with certain kind of recovery.

So what SLaM are looking at is a quite a wide skill set, so SLaM train people for eight weeks and then after that, they are working with teams to see where SLaM can have vacancies. At the moment, a lot of her work is trying to to transform their vacancies into pure workarounds. So maybe they’ve got a vacancy for a support worker, and see if we can transfer them to that team.

Carer members raise queries

There was a large number of questions from carer members one was on what support was given to Peer workers in such a demanding role. This being clinical supervision or regular support, support from line managers, etc, because there may be the sharing of quite challenging information

The peer support lead responded that peers get the same support as any member of staff and will have regular supervision with a line manager. Access, reflective practice, team meetings, whatever it is anyone else can do, but will also be put in regular supervisions that will be facilitated by someone who’s had experience of using their lived experience in the workplace, and which SLaM will ask all our new workers to do.

I also raised a query on why there is either a lack of carer peer supports or none at all, especially if service users get the majority of peer workers, peer befrienders, peer supporters. Carers are also using services, so where are all the peers?

It was noted by the peer lead that it has to be an evidence based initiative. So we need to have the evidence before they can start rolling it out. And at the moment, SLaM has evidence in regard to people with lived experience. So we know there’s loads of informal peer support that goes on for carers and meetings like this, but also just people getting to know one another. In her view, there probably will be. And I can’t imagine why wouldn’t work, with peers is supporting one another. Unfortunately at the moment it doesn’t look like SLaM going to follow that path.

Oxleas responded that they have a different view of carer peer workers than SLaM. Oxleas also have lived experienced practitioners who work in the trust and they have trained, experienced practitioners who have been carers, so they have broadened it so that includes anyone and the way that the roles and then people are employed as members of staff. their lived experience is an added extra. So you might be working in the board or in the health care system, but you are there with your lived experience, whether you’re a carer or a service user, and then that is the extra that you add to the role. Oxleas disagreed that carers were seperated from peer evidence based because how can NHS staff even begin to relate to carers?

There was a big discussion on the nature of peer support and on the peer support projects especially on the peer project regarding peer workers being placed in the Emergency department of Guys and St Thomas’s hospital.

There was also a very good question from another carer member regarding peer support and someone in a crisis, I think it went like this. As in terms of peer support, it’s relatively more needed when, when there’s a crisis, when a patient presents to an acute Ward, and this may be their first very first experience of the loved one, and experiencing mental health, rightly or wrongly, whatever the case may be, that is where that peer supporter is needed.

Plus we had several questions regarding if the involvement register was some form of peer support or if peer support was utilised across the involvement register.

The peer support lead did note that there is a problem on the way that the service works and particularly mental health services is that it’s not a very holistic approach. So one of the questions will be that the services not providing care for carers because that’s not their role. The MH services role is to provide care for service users. The problem is this, we know that if you support caregivers, then that’s going to have a beneficial impact on everyone including the service users. She admitted there needs to be a continued challenging of culture on how peer support works. It was mentioned to approach researchers regarding peer support at Kings college, but the Institute of Psychiatry, Psychology and Neuroscience was also mentioned.

The discussion went on for some time, but I think I have made this a very long blog post. This is the July’s update for the Lewisham BAME MH carers forum.

Joint Southwark & Lambeth MH Carers forum July 2020

Maudsley_Hospital_Main_BuildingWelcome to the July update of the MH carers forum.

The forum Encourages carers of those with mental health needs to get more engagement from services and to understand how mental health services work. Carers can also query them and compliment what they feel are going well. In attendance were Southwark Carers trustee, Lambeth carers hub mental health carer support. A few carers especially involved ones. The carer inpatient lead for Southwark and also the Carer lead and head of occupational service lead for Lambeth. The forum was also joined by staff and a governor from Guys and St Thomas to speak a bit about their mental health and carer’s strategy. We also had a young person demonstrate a new online application called “kooth”, aimed at young people.

Lee Roach from Lambeth Lambeth Hospital spoke about updates from Lambeth Hospital. He mentioned to the forum about staff who are carer champions over at the hospital. Staff work in a team effort, but not all of them are occupational therapist by background. Lee mentioned the different roles some of the staff do as some of them are running carers groups, some of them were maintaining carrier information boards.

Some events are being planned over at Lambeth hospital for carers. A recent event had a Junior psychiatrist, and occupational therapist and pharmacist talk to carers about questions that they had about medication and about diagnosis for their loved ones. Previously Lee wanted to establish a Carer champion in each of those six teams that were working out of the the Lambeth area. They made a little bit of progress and two or three members of staff were identified as carer champions with others who were keen to be involved.

lambeth-hospital

They even had a carer champion at community level, but unfortunately COVID-19 hit and services had to be put in lock down and what took place then was that the teams were reorganized and merged to cover services. Service leads were expecting a significant reduction in staff availability. So at the moment they are working to operational crisis levels.

Lee continued to state that for the 21st of August they plan to organize a meeting for carer champions. So they will get members of staff together alongside carers and aim to invite involvement from carers to update them on regarding the COVID period. The event will also share good practice and also to advise the new carer champions about what the expectations are for them.

The Lambeth hospital carer and services lead spoke how important that they make sure that the clinicians are thinking about carers and also to make sure that they are aware of all those people that are involved in that person’s life as much as possible.

It is also important that staff record carer’s details on SLaM’s patient record system so that should anything happen to the patient then the clinicians able to stay in contact with carers. Lee mentioned it is important carers are offered engagement and support plans for their needs, not just the need to services and talk about what some of the needs they might have.

Lee excitedly mentioned the that they are developing some exercise classes for carers. These exercise groups are being organized so that information can get to the clinicians and the carers in Lambeth as quickly as possible. On the 7th of September they are going to organize some events for the community mental health teams in Lambeth to raise the profile of carers and the needs of carers and I’m looking for volunteers and people who are on the involvement register. Lee felt the most effective way of communicating with clinicians about the needs of carers and the importance of involving carers, in the care of their loved ones, is for carers to tell their story and to hear that narrative of the carer’s experience.

The update impressed the chair of Southwark carers who was interested to know more about carer champions. I also raised the idea if Lambeth are looking to employ a Lambeth carers inpatient lead as for what Southwark have. I also wanted to know more about the role of Anna Penn-Carruthers who is a centre lead at Streatham living well centre, she was unable to attend the forum, but will come at a future date. I also wanted to know the situation with COVID-19 affecting Lambeth services.

For some time no carer is allowed on the Lambeth hospital site and that was the same for the Maudsley site as well. So no physical visits allowed. That’s now changed and carers are able to visit. But it needs to be by appointment now they have got rooms allocated on the Lambeth hospital site for the carer’s visits to take place. The thing is COVID-19 has made things much more restrictive. Lee feels the challenges for everyone over this period has been utilizing virtual meeting spaces and in how they are using the software mircrosoft teams. Things are moving back more to where they were before, but they are still very limited in terms of how staff visit people’s homes, organizing meetings and limiting the amount of unnecessary contact.

Kooth application

Next up for the Joint Southwark and Lambeth carer forum was Chanelle from XenZone to speak about Kooth which is an online mental wellbeing community. Kooth gives young people access to a community of peers and a team of experienced counsellors. Kooth is accessible for any young person who lives works or studies in Lambeth from the age of 10 to 26 years old.

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The good thing about Kooth is that it is free mental health support, but obviously not a replacement for the NHS or any mental health services. Kooth also has a link of different services that young people can contact when they’re in a crisis, which would be national services, because Kooth is not a crisis service is also something that people can use alongside with those those resources.

Shanelle showed us a quick video about Kooth, which can be seen from below.

Video of Kooth demonstation

After the video Shanelle explained what it’s like to sign up to kooth via a demonstration. She mentioned that when you sign up to kooth that it is very simple. So as shown in the video, it is an anonymous service. So they don’t ask people for their names or their address or anything that identifies them. Kooth only asks for basic demographic data that’s taken such as their gender, their ethnicity and age. And the reason they ask for their age is that they can make the content appropriate to the age of that young person.

Kooth has many different links where one of them allows a young person to look into the different counselors, as they can see different biographies about them about whatever they’ve chosen to speak about. Kooth is available in the boroughs of Lambeth, Greenwich, Bromely, Bexley and Southwark for the ages of 10 to 25.

Staff from both South London & Maudsley and Guys & St Thomas were interested to developing links to Kooth for referring to it as an additional resource.

Guys and St Thomas Carers Strategy

Next up were staff from Guys and St Thomas regarding their carer and mental health strategies. I feel part of the aim of this forum is to allow carers what services, policies and strategies are being done to aid in supporting their role. We were joined by Jackie Waghorn who is their new Mental Health lead for that trust taking over Caroline Sweeney. We were also joined by Sarah Allen who is the Head of Patient Experience at Guys and St Thomas talking about their carer’s strategy.

Guys-Hospital

Guys and St Thomas also sent Nikki who is one of the dementia, clinical nurse specialist on dementia and delirium services and they are inpatient based who their main role is to provide care and support to patients and their carers and staff within the inpatient settings. Nikki spoke about how they support patients by ensuring that staff carry out the principles of the St Johns campaign such as ensuring that flexible working, flexible plans are committed. Other things done are getting out carer surveys out to carers so that they can really understand that they have a voice and staff can understand what carers needs are. The staff normally carry out these carer’s surveys when carers come into the wards to visit their loved ones, and then staff can go through the survey with them. Otherwise, they send out carer surveys via posts and staff collect them.

Next to update the forum was Sarah Allen who is Hear fo Patient experience, she came to talk about the NHS trusts carer’s strategy and carer’s policies that are under review. There are 3 priorities so far which the trust will be looking to review.

1. Providing carer’s network days which are for local residents in Lambeth and Southwark, plus GSTT staff who may also be carers. The aim of these network days is to develop carer’s skills further in sort of key areas is what’s known as key skill stations. So sort of little mini sessions on different aspects of caring for someone. So that ranges from things like providing personal care and mouth care, to things like on dementia and delirium.

2. The other priority is they have a carer’s passport at the trust, but it’s not quite as well embedded as they would like. But really the role of that document is to support staff in understanding and recognizing the role of carers and the part they have to play in terms of the care and sort of providing information and understanding on the condition needs and preferences of the patient.

3. The final priority really is around for GSTT staff. This being that some of their staff are carers and is pretty much recognizing that their own staff do you have caring responsibilities as well often in addition to being parents, for example, that may also have young children that may also have a responsibility. They’re looking after an older parent or somebody else within their extended family or Friendship Circle.

The chair of Southwark carers was interested to hear more about Guys & St Thomas’s carers passport. She was also interested in the networking days.

Next we had Jackie Waghorn speak about her role as the the new mental health lead at Thomas’s. Jackie has been in post for six weeks, so is pretty new and still trying to find her feet in the organization.

st thomas

She has has come from Croydon, where she was doing a very similar role running health services. Prior to that. she worked in offices and mental health trust for many years, managing crisis and mental health services and working in crisis and mental health services.

Guys and St Thomas Mental Health Strategy

Jackie spoke more about GSTT mental health strategy which was launced on Mental Health Day and the strategy lasts up till October 2022. In developing the strategy, this strategy was devised by her predecessor, Caroline Sweeney. And in devising this strategy, she did consult with a number of different stakeholders, including patients and carers. Jackie was not sure what any of the forum members were involved in that.

What the strategy does and in, in supporting carers is not quite specific, becaue it’s basically divided up into three sections which are patients, people and partnerships. And it really is just thinking about how they can involve carers and how they can support carers in each different section. Jackie is looking to basically develop a group which would oversee policies and things to make sure that mental health is considered in everything that GSTT do. Next we heard from Georgie Smith who has recently recruited into a new role which is Mental Health Improvement lead.

Her role is and the work that I’ll be doing is is carrying out several projects under the name of Lilly Sterner, who was a patient who left a legacy. In those projects she will focus around improving mental health awareness and improving mental health delivery within the trust of guys and St Thomas. Then Paula one of the governors from Guys and St Thomas NHS Trust. She was interested to hear if there was enough support within the community for mental health and also onthe strategies that the trust will be administering?

I was interested in how the trust engages with patients and the public and if there were staff at guys who has a focus on carers. Sarah mentioned that they try quite hard to actually involve patients and carers in sort of the redesign of pathways and redesign of services. This is done via the patient and public engagement team. It was also mentioned that there has been a number of staff trained up to become what’s known as mind and body champions, the Mind Body Program from kings health partnerships, has done a lot of training for keep just staff focused mental health awareness. So they have mental health champions and obviously part of mental health is care awareness. It will be good to see if GSTT can work with the joint Lambeth and Southwark MH carers forum as their new Mental Health lead continues her role, as the forum aims to raise the profile of mental health carers.

Southwark inpatient carers lead update

The last update was from David Meyrick who is the Southwark carers lead for inpatient wards. David reported that all the Southwark Wards are open, were wards that were moved to other boroughs are now back in Southwark. There is other good news that the carer champion roles are becoming more relevant and active. SLaM have also just finished a project on one of the Wards listening in action project. This has been a project to make the ward more family friendly. There has also been an improvement to the waiting area the visiting area.

The waiting room has been redesigned search cordoned off to give a bit more privacy and social distancing plus two families can to visit at once rather than a portable partition so it’s a bit more than welcoming and relaxing area and and also a lot of work on the leaflets and literature produced for carers and help make it more informative and more family friendly from that perspective.

We also had an update from carer peer supporter Annette on how she is co-facilitating carer support groups online and how the peer support role empowers her to support families and carers.

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.

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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