Welcome to a brief update of my South West London carers peer group. The reason this update is brief is because we had no speakers planned to attend and sometimes carer members just update on their situation.
A quick reminder is this group is aimed at those who are caring for someone with serious mental illness, they could be using the services of the local mental health trust South West London & St Georges or perhaps the person they are caring for is not in recipt of services. The carer group is a peer, engagement, networking and empowerment group covering the 5 boroughs SWLSTG covers (Richmond, Wandsworth, Merton, Kingston & Sutton).
For february we had a very good turn out and some new members. Most of the discussion was on sharing knowledge to those new to caring or those who were not sure what support they could get.
As usual I wont report anything confidential between members, only when speakers talk about issues that those unable to attend can catch up on.
Fast forward to May and engagement has been increasing between my groups and engagement from NHS England & Improvement and the local Healthwatches. Even if members struggle to feedback, they can at least understand what are the important issues of the day.
Back again with another blog post from unpaid carer Matthew McKenzie. I run many carer peer groups and forums and it has been a while since I updated on my SW London carers group. This is because I have been very busy working on my new poetry book for 2022.
Speakers for January Karen Persaud – Involvement project Discussion on speakers for the year Matthew McKenzie – Involvement comparison
Karen Persaud Presents on SWLSTG involvement project
Karen come from a caring background and has been a carer for 14 years. Karen was impressed with the stories that have been shared at my group and felt they related to her at a deep level. Karen explained her past work as a carers champion and the work she did with the Royal College of Psychiatrists on formulating the Community Mental Health pathway, the Mental Health Act review and a few other bits and pieces she got involved in.
Karen felt she could actually influence the way carers were being treated because she was often ignored as a carer in the past and wanted to make a difference. In the long run Karen ended up having to make a lot of formal complaint and even though things were slow going through the formal complaints procedure, she felt thats when things were changed. All this ended up where doors were slowly open for her.
Now Karen is working with SWLSTG it has been quite inspiring. Karen added that she is in awe of what Matthew does especially his commitment and how much he actually takes on and actually gets done.
Karen thanked the carers group for having her and that she was really pleased to present what SWLSTG involvement team has been getting up to.
Karen mentioned about involvement team. The recruitment and the in patient involvement of people with lived experience of mental distress in developing services for the for the vocal trust in the community. What Karen is looking to do is involve from basic involvement to full Co-production as much as is humanly practicable.
The team has grown over the last year. Since she has only been there for a few months at the mental health trust. Karen then explained who was in the involvement team and what day do.
Karen mentioned that she is also passionate about, one of them being CAMHS which is child and adolescent mental health services, but not something that she is directly involved in at the moment.
Since Karen only just started work she has noticed the involvement activities slowly increasing where they have now got six peer support workers who have started, one of whom is a dedicated carer, peer support worker, and her name is Zoe Hannah.
Members of the group asked why should carers be involved which lead Karen to explain the following.
Carers have a unique insight that can help shape a more appropriate recovery plan
Carers are more than a point of contact, they play a vital role in patient and service users recovery.
Carers will often be responsible for managing medication, accommodation, finances and a range of other social, emotional and healthcare needs.
They may not be clinically trained so it’s crucial that they are supported.
Carers are a vital piece of the puzzle and their health and lives are impacted by their responsibilities
SWLStG is committed to improving the experience of carers and supporting carers, supports patients and service users so improves outcomes.
To show SWLStG commitment, we invest in resourcing and embedding quality standards and processes outlined in Triangle of Care, Carers Engagement Thermometer, NSUN 4Pi in addition to NICE Guidelines and CQC Regulations.
Matthew presents on carer involvement
Since I am mainly on involvement at South London & maudsley, I wanted to compare how involvement was developing at another mental health trust who is part of the South London Partnership.
This part of the group where we want engagement on how involvement works at other NHS trust and I recently asked this off my local mental health trust in regards to involvement as a form of comparison.
I pointed out to the group that one of the worst aspects of being a carer is to be isolated and uninvolved. This means not on being involved for caring for someone, but being involved regarding changes to health & social care services.
The idea basically, you know, one of the worst aspects of care is to be isolated and uninvolved when I say uninformed, I mean getting involved in, I suppose veteran services Metro services not just involved in regards to the care of someone, but how services work and given their ideas and learning from other carers who’ve been involved just as what Karen presented before.
I explained to the group that a good involvements structure easily shows a bird’s eye view of services, and how it reveals involvement for both patient and carer.
The picture above shows an update on the projects showing involvement in the Southwark mental health services. I showed involvement updates and structure for some other services, but felt carers should do the same regarding SWLSTG.
This is the update for January for my SW London carers forum.
Here is a very brief update of my South West London Mental Health carer peer group. It is one of the 5 carer forums I do, but is a hybrid of a peer group and an engagement forum. As with all carer forums that I run, the forum seeks engagement from mental health services, since most members are carers of someone with mental health needs.
You might find it wierd that I am doing a november 2021 update at the begining of february 2022, but I have been so busy running carer groups, working on my poetry and helping out engaging with mental health trusts.
The SW london carers forum was packed with speakers including myself
Joy Hibbins – CEO of Suicide Crisis Rachel Nethercott – Carers UK – State of Caring Report 2021 Diane Fox – University of Kent on experiences of unpaid carers Matthew McKenzie – Carer Rep and Author – carers and poetry project
We were also joined by Sir Ed Davy’s team who plan to attend when they can to gain some insight into things affecting unpaid carers.
Joy Hibbins presents on the importance of suicide prevention.
Joy Hibbins an author, runs a charity called suicide crisis, which provides suicide crisis services and trauma services. The reason why Joy wanted to set up a suicide crisis center was because of her own experience of suicidal crisis in 2012, after a traumatic experience. It led to her being referred to the mental health crisis team for the first time. She found that the services didn’t work for her and she could see very clearly why they weren’t working for her. She started to think that what was needed was a suicide crisis center, where people could come every day when they’re in crisis. Except if they were at imminent risk that they could be supported over a period of several hours. She started to think about the ethos and the methods she wanted to use because she felt that they needed to be different from those of psychiatric services.
Joy experienced a huge amount of skepticism and doubt that someone like her could even set up a suicide crisis center. Not only did she want to set up a crisis center she also wanted to set up a center, which would be about early intervention in order to try help prevent descent into crisis. So it was seen as a very ambitious project, particularly for someone like herself, who was a psychiatric patient that had recently been in crisis.
So with the suicide crisis center, people can either self refer or be referred. The referrals are from NHS, police charities, and all kinds of other agencies as well. From 2012 there was huge doubt and skepticism to where things are, plus it has been an extraordinary journey for the team in a very unexpected journey. where the work is having an impact in countries like New Zealand, where the Ministry of Health in New Zealand contacted Joy’s team, as they were devising their new national suicide prevention strategy to find out what they could learn and how they could use some of the learning that they took from Joy’s team in their strategy.
Some of the points about their suicide crisis center is that it’s in a central location, easily accessible, it’s not a drop in center, but they can see people at very short notice. So sometimes they state to people not to think of them as an emergency service. Altough Joy thinks there are times where they have to be and that there is a need to be able to see people within half an hour, whether that’s them coming for the service or the service going out to them.
Very recently Joy has published this 40 Is the suicide prevention pocket guide book. There’s a slight irony that it’s called a pocket guide book because she thinks When they planned the book with a publisher, it was going to be a pocket guide book. But in the end she wanted to also make it a really comprehensive, detailed book that would be full of relevant information.
Eventually it became 220 pages. So it’s much more of a comprehensive handbook. But she liked the idea of a pocket guide book because one of their clients made this wonderful quote a few years ago, and he said that he carries us in his pocket with him at all times. Joy thinks that really highlights the strong connection that they build with their clients so that even when they are not with them, they feel connected with the team. Joy always has kept this in mind.
Joy Hibbens will be engaging more with our SW London group members regarding suicide prevention workshops and talking to families and carers for 2022
Rachel Nethercott – Carers UK – State of Caring Report 2021
The next speaker was from Carers UK and Rachel has been very helpful engaging with my carer forums to update us on what Carers UK has been doing.
This section was probably an interesting section for Sir Ed Davy’s team as they want to report back on the groups findings plus questions that were raised.
Rachel is the Senior Research and Policy Officer with carers UK. She was at the group to present some key findings from Carer’s UK annual State of caring survey, and also how these findings inform Carers UK practice, and policy. Rachel mentioned that some of us actually may well have completed the survey, in which she thanked us. She felt that our time added to the kind of painting a picture of the key findings.
She recommended if we have time that we go and read up the report. Rachel then gave us a quick overview of the report. It’s actually the largest survey of unpaid carers in the UK. Carer’s UK conduct this every year, except for 2020 due to the pandemic. Carers UK did another research instead. But normally, they do this every year. So for the year 2021 it was completed by over 8500 carers, the vast majority of them are currently providing care. The kind of stats she showed in the presentation are for people who are currently caring.
The people who complete the state of caring survey are more likely to be female, more likely to be women, more likely to be disabled. than the general population, and also likely to be at the heavy end of proving care than the average carer. Almost half of everyone that responded to this survey have over 90 hours a week.
Some people who completed the survey were also generally well connected to services and support, they identify as a carer in where they knew their rights and the support that they were entitled to. Unfortunately some carers who filled out the survey were less likely to be working, which can be your average carer. So only around a third of the people completing the survey are either in full or part time work, which is less than what Carers UK had expected to see. The average person who goes filling out the survey were British women. It’s still interesting findings, and it tells us a lot about carers as Carers UK would love carers from all backgrounds to fill in future surveys.
Diane Fox – University of Kent on experiences of unpaid carers
Diane Fox works at the University of Kent at the Persons Social Services Research Unit. She is working with a colleague from the London School of Hygiene, or medicine, on a project regarding diverse experiences of unpaid carers across the caring projectory, this being CCAP short.
Diane came her to give us a bit of background knowledge about the projects, and then hopefully get some of our input.
Diane mentioned that the research often doesn’t follow the same carers over time, and doesn’t often look at differences between subgroups, which ties in with what she is presenting. It’s a question about not just looking at White British carers that are female but strengthing the design to include other carers.
For this study, they are trying to look at how or why some carers maintain a good quality of life over time, and how or why others do not. The reason they want to do this research is to inform the support services for carers, because we know that people’s experiences of caring can vary quite widely. For instance, someone with a degenerative condition is likely to be very different to caring for someone who’s got a relapsing mental illness, caring for a spouse or a partner is likely to be very different caring for your adult child, or your aging parent. So it’s got four research questions.
Diane’s researchers looked at what’s associated with unpaid carers quality of life over time. Does this differ between subgroups of carers? What support services or other things enable carers to optimize their quality of life? What barriers to frequently excluded care space in accessing services? How can these be overcome?
So that, again, ties in to what Rachel was talking about that some groups are less likely to identify themselves as a carer or access services. So there’s five stages to research that feed into one another.
So first of all, the researchers did a scoping review to look at previous research and identify what’s associated with quality of life over time, they found that so many things are in that research that they needed to narrow down the scope of the project to keep it manageable. So for the second stage, they held a series of stakeholder workshops, which they invited a nationwide group of parents and service users, local authority commissioners, service providers, and community and voluntary organizations. At the workshops some of the things that they said in the open discussion where people would firstly outline their caring circumstance, identify it, identify areas of difficulty, and the sources of support that they found helpful.
So in the open discussion, the attendees spoke about particular issues but they were facing particularly related to the pandemic because that was very pertinent at the time just come out of one of the lockdowns. Diane presented how their input fed into the content of the questionnaire. So this is what the researchers got from the first bit of discussion they had with people.
Next, they asked carers to rank topics in order of importance, which was shown on a graph that shows what their preferences were. So more than half of carers said social support was the most helpful. Diane spent quite a bit of time presenting more of the research where we had a Q&A session to help inform Diane our experiences.
Matthew Mckenzie’s Poetry Project
As I have mentioned already, I am working on my poetry phase regarding the experience of care. I read out one of my poems call “On Alert” at my carers peer group and you can view the video of my poem below.
This concludes my November update of my SW London carers peer group
Welcome to a brief update of my South West London Mental Health carers peer group. The carers group covers the 5 boroughs of mental health trust South West London & St George and seeks to empower unpaid carers with engagement, information and a peer environment.
Speakers for the October forum 2021 were
Tristan Brice – London ADASS
Christian Sestier – On involvement of open dialogue at SWLSTG
Alison Crane & Yasmin Phillips (NELFT NHS) – Open dialogue
Tristan Brice presents on London ADASS carer focus
Taken off their website “LondonADASS is an Unincorporated Association that brings together the London based Directors of Adult Social Services (DASSs) to enhance the quality of adult social care across the Capital. Working in partnership with adult social service providers through Proud to Care London, they are committed to improving the recruitment and retention of the adult social care workforce across London.”
Tristan Brice who chairs the carer group at London ADASS was at the forum to speak on what priorites the organisation has for carers. One of the things Tristan presented on was the discounts for carers project, which gives carers a discount on shopping and other necessities. An interesting project is how ADASS will focus on NHS staff retention and how to improve retention. They want to do three things. London ADASS want to promote the sector as a as a place staff want to work. London ADASS also have a project on providing carer lanyards, just like what NHS staff have. There is a focus on raising the identity of unpaid carers as a way to say they should be valued as working for the same team.
When Tristan mentioned this, a lot of the carers eyes lit up as they wondered what the Lanyards would look like.
Tristan also spoke about the online carer groups that London ADASS are hosting, these usually being singing and dancing groups to reduce isolation and increase fun with creativity. Other priorities were on commissioning in regards to safeguarding, developing the workforce, particularly practitioners. The other priority is supporting integration with health colleagues.
You can see the safeguarding video below.
The big focus is trying to not see carers through a social care lens, but through the lens of them as doing an amazing task of looking after someone close to them.
The last presentation was on the success of the carer’s festival, which was online until things change regarding the pandemic. You can see the video below.
Open dialogue presentation
I am fairly well known for promoting the Triangle of care project for carers nationally, but there are other national projects which mental health trusts try to incorporate into their services. One of them is Open dialogue and with a request from carer members, I got support from North East London NHS Foundation trust to speak about how they are incorporating Open dialogue into their services.
First to speak was Yasmin Phillips who is a Community Mental Health Nurse and was the first full time psychiatric nurse using an Open Dialogue approach. Yasmin explained that she works in the dialogue first service at NELFT, and she trained in open dialog in 2014. The Open dialogue is now taking referrals all over England. Yasmin then moved on to explain what Open dialogue is about, which is a reflective approach in increasing dialogue.
Open Dialogue was pioneered in Finland and has since has since been taken up in a number of countries around the world, including much of the rest of Scandinavia, Germany and several states in America.
Some of the results so far from nonrandomised trials are striking. For example, 72 per cent of those with first episode psychosis treated via an Open Dialogue approach returned to work or study within two years, despite significantly lower rates of medication and hospitalisation compared to treatment as usual.
Next to speak a patient involved in Open dialogue in which he mentioned that discussions about the patient on ward rounds is a recipe for disaster, if the patient was not included. He referred to the phrase “Nothing about you without you”. So that just the idea that the patient is involved in that the conversation and it should not be done without them.
So when the involved parties come together, it might just be starting off saying “how do you want to use the time today?”, as non directive as that. And then wherever it goes, it could be lively, all sorts of things. But at a certain point, what one of us might say could be a reflection where they basically press pause on the meeting, and they just turn to each other and share just whatever’s coming up.
This concludes the brief update of my SW London MH carers forum for October 2021
Welcome to a brief update of my South West London mental health carer peer forum. This group is a mixture of carer peer support and mostly engagements from health & social carer organisations, especially the local mental health trust South West London & St Georges. This carer’s group cover’s 5 boroughs as all 5 carer centres including the mental health trust work hard to promote it.
An extra bonus of this group is I do open it up to national speakers so the following speakers for September
Welcome back to a brief update of my South West London mental health carers forum. It is not like my other forums since this one tends to be a hybrid of peer support and carer engagement. Plus its probably my largest carer forum which cover’s 5 boroughs or six boroughs if we engage with NHS South West London CCG, because the commissioners cover six boroughs that being the borough of Croydon.
Anyway, one of the main focus is on how South West London & St George engages with unpaid carers, especially about mental health services, but the forum can then become a networking forum for other carers even outside SW London as sometimes national speakers may appear.
The speakers for August were
Elizabeth Stirling the new CQC inspector for SWLSTG
Tristan Brice from London Association of Directors of Adult Social Services.
Elizabeth presents on what the CQC is about
Since the CQC spoke at length regarding roles and plans, I can’t blog too much about that, however Elizabeth was kindly referred to engage with our group since their interested in how the group is supported.
Elizabeth spoke on the following.
How she has Worked in health and social care for 23 years
Worked as a support worker for four years
How she has been a Social worker since 2005
Worked for Mental Welfare Commission for Scotland
Has lived experience on caring regarding mental health.
Elizabeth then moved onto what the CQC does as in that the Care Quality Commission monitor, inspect and regulate services to make sure they meet fundamental standards of quality and safety, and they publish what they find, including performance ratings to help people choose care.
The CQC also set out what good and outstanding care looks like, and they make sure services meet fundamental standards below which care must never fail. Obviously, the CQC use information and evidence throughout their work, including people’s views and experiences of care. The CQC work closely with the public, other organisations and local groups across everything they do, that includes patients and carers of course.
Next Elizabeth explained the core fundemental standards for the CQC and what they look for. These would be
Person-centred care Dignity and respect Consent Safety Safeguarding from abuse Food and drink Premises and equipment
To also mention although the above is important, the CQC do look for other things as well. With the list above, they apply to fundemental standards that apply to mental health trusts
There was a very long Q&A session regarding these standards that apply to the rating of SWLSTG, but the important distinction was that it was coming from a carer’s perspective.
Each of those standards mentioned must follow a criteria of questions usually 5 of them, which are
Safe: you as the patient protected from abuse and avoidable harm. Effective: your care, treatment and support achieves good outcomes, helps you to maintain quality of life and is based on the best available evidence. Caring: staff involve and treat you with compassion, kindness, dignity and respect. Responsive: services are organised so that they meet your needs. Well-led: the leadership, management and governance of the organisation make sure it’s providing high-quality care that’s based around your individual needs, that it encourages learning and innovation, and that it promotes an open and fair culture.
Of course there has been a massive impact regarding how the CQC works and I had asked Elizabeth to talk in depth on covid-19.
Elizabeth talked about how the CQC had to adapt on how they work. This was a mix of on-site and off-site methods. In March 2020, the CQC suspended their routine inspection programme in response to COVID-19 and developed their ability to monitor services using a mix of on-site and off-site methods. Other changes were on improving the CQC’s ability to monitor risk to help them be more targeted in their regulatory activity. With that, by bringing information together in one place for inspection teams, presented in a way that supports inspectors with their decision making and by testing elements of how they want to work in the future, including how they provide a more up-to-date view of risk for people who use services.
I myself have always stressed to carer’s that the CQC is not a one way system, unpaid carer’s must provide the CQC with information and also requests so carers are working in partnership with the CQC. Elizabeth expanded on this by stating Information from patients and carers is very important to the CQC. All the information the CQC receive will be added to the records they have for each care service. The CQC can use this information to help decide where to inspect next, and what to look at when they do. When the CQC receive information about a concern for someone’s safety, they will treat it as urgent.
The CQC also use what people tell them to understand the quality of care they get from services like care homes, care agencies, hospitals and GPs. It helps make care better for everybody.
Again there was a very long question and answer session from members of the forum, but for those reading this blog please see the below.
Here is the brief update of my South West London carers forum for July. As mentioned, I have not been blogging much due to working on my 2nd book on unpaid mental health carer experiences. I still run my carer groups including helping out West London NHS health trust on their Black Asian minority carer peer group.
However back to South west London.
The following speakers for July were
Phoebe Averill – PHd Student at Kings College Carol Ellis – Carer speaking about her son’s new book Ros Spinks – NHS England Commitment to Carers programme Myself on Why unpaid carers must hold to account
PHOEBE AVERILL PRESENTS ON HER PHD PROJECT
Phoebe from Kings college University spoke about focusing on safety and quality of care in community mental health Services. So as part of the research, she wanted to invite carers to share their views. Phoebe wanted to give us just a little bit more info about the research as the problem of patient safety hasn’t really been a given as much research which is limited, although there is a growing amount of research from those interested in this area. Still, it’s mainly focused on inpatient mental health services. In actual fact, most mental health care experiences are actually in community settings.
So that’s really important that patient safety in community mental health settings are researched as well. So that’s what she is trying to do with the research. Phoebe is speaking with families and carers of adults with mental health problems in the community services. What she is trying to find out is what kind of “safe and unsafe” care means to the carers in this context, because it’s not very well Understood. She would like to know what types of safety issues you worry about as carers and any ideas about what can make community mental health care safer and would could improve the services. There really is no right or wrong answers, it is about hearing carers experiences and opinions.
Phoebe also has spoken to services as well as to healthcare professionals, but it’s really what the carers views are? So what does the actual study involve? It will be a discussion with other carers since that will be what kind of format unpaid carers prefer.
For more information about the project I have included a screenshot below.
There were quite informative questions from carer members of the forum, but I have a lot to catch up with. So will move on to the next presentation.
Carol Ellis and her son talks about his new book
Carol’s son Shaun Ellis started off talking how he ended up with depression due to the death of his father. His book “A Gentle Breeze: Living with depression” focuses on how he managed to survive attempted suicide and his journey battling depression.
Shaun wanted to highlight such experiences through his words and actions. This is why he chose to write a book about his experiences. In this book Shaun describes all the techniques he used to battle his depression. As well as sharing his story, he wants to reach out to fellow suffers and encouraging them to seek the help they need.
Shaun then read a couple of passages from his new book, which led to questions coming from the carer members of the forum.
I have placed a link for those interested in the book below.
Ros Spinks from NHS England & Improvement presents on the Commitment to Carers programme
Ros from NHS England kindly engages with some of my carer groups I run online for half of London. She spoke about her role as one of the regional carer leads, however she covers London, while the rest covers England. Ros spoke about how the ‘commitment to carers programme’ is linked to NHS Englands long term plan, which is actually 2 years old. Ros talked about one of the big areas which are the quality markers in primary care. These are a set of standards that carer’s should expect from any GP practice across the country. However it is not mandatory, which is a bit of a challenge, because it can be difficult to get GP practices to do things in different ways, not because they’re bad practices, but due to such challenges.
Another quality marker is on identifying carer’s because there are still issues regarding the identification of carers in health and social care. It might be that some people do not identify themselves as carers, but that is not the point. It is up to the NHS and social services to help people understand and help educate them on what support they can get as an unpaid carer.
There was a Q & A session from members of the South West London carer forum.
One question was on why are the quality markers not mandatory.
Ros mentioned there has been discussion to make those mandatory, but raised the option that some GP practices work differently and would learn better from other GP practices in a network. Sometimes it is better to try different options ranging from training to rewards if GPs do well in identifying carers. Ros mentioned there is some leverage with the CQC as they use the NHS England quality markers to see if GPs are actually listening to their patients and carers.
Another question focused on what would Ros like to see in place to bring equality to unpaid carers to the level their patients have.
Ros felt she would like to see fantasic carer support centre that actually has the resources to care for the unpaid carer. She would also like to see a carer’s champion just like what they have in the GP practices in the London bourough of Hilligdon. Those in the GP practice could act as the carer champion, which could be the receptionist or GP and surprisingly it does not cost anything, they can help being carer friendly, identify carers and help refer them.
Another question which was very important came from a carer wanting to know what secondary care was doing for carers and if they follow NHS England & Improvement quality markers.
Ros was delighted such a question was asked and she mentioned hospitals were working towards a carer’s card or passport, actually some hospitals already have this and it is a recognition that a patient has someone who cares and that carer does need support and to be kept informed, infact the best secondary support from hospitals is that the carer will be involved in all the care decisions made and not just told what will happen or the carer be seen as an afterthought.
There were many other questions raised from carer members, but below was the one raised by myself on the commitment standards as I was interested in how NHS England’s Commitment for Carers has been progressing since it’s release around 2014. Ros responded to all of them, where some of the responses I have added below since at the time of the document it mentioned a few tasks were ongoing.
NHS England to raise the profile of what a carer does and how they can be supported with health care staff.
NHS England signed up and supports and promotes annual Carers Week campaign.
Establish a NHS England board level ‘Carer Champion’ and support NHS England board level members to shadow a carer.
A senior NHS England Carers Group to take ownership of the ‘Commitment to Carers’ document and NHS England’s support for carers.
Ros mentioned it is Jenifer Kenward who is on the senior management team and she links to the departments health and social care as well.
Collaborate with carers’ organisations to establish how carers award schemes might be extended to commissioners to support improving the experience of carers across England.
Ros responded these would be your Carers UK and Carers Trust organisations.
NHS England in partnership with NHS IQ to hold a national NHS Young Carers event to support how young carers can be better supported and the wellbeing of young carers promoted by the NHS.
Ros responded that usually three times a year, every region has a certain amount of young carer champions that come together to help drive the young carer’s strategy.
NHS England to support a Carers Champions Network bringing together the healthcare and carers groups.
NHS England will continue to implement the Equality Delivery System for the NHS, involving staff, patients, carers and the community to ensure equality is embedded within all of its core business including workforce development.
Ros mentioned NHS England has to do this, its practically a legal duty, she went into more detail about this.
NHS England is committed to supporting innovation in the NHS and will ensure that innovative ways of engaging with and providing care for carers are considered through the national innovation fund schemes.
Priority 1 Raising the Profile of Carers
NHS England to support the relevant bodies, including Health Education England, to support the use of packages for health care staff that increase carers awareness, and support staff to identify, involve and recognise carers as experts, and as individuals with their own needs, choices and aspirations.
On this question, Ros stated that Health Education England do have a training package that actually includes all frontline staff to increase carer’s awareness. Ros still mentioned there still is a problem to make training mandatory and she would very much like to see that.
NHS England to support the relevant bodies in signposting carers to information and advice about support available. The reason I asked Ros this question was because I felt even though resources are out there for carers, it seems not many carers are using them. I am aware there are social perscribers, but they seem geared for older adults to combat loneliness or for patients.
NHS England to contribute to increasing the awareness within the NHS of the duties and functions of local authorities with regards to carers.
Ros spoke how NHS England has made big strides on this task specifically for Integrated Care Systems (more on that in my September carer forum for Lewisham where Ros spoke about ICS Changes). Ros mentioned there has been much improvement and better awareness from a strategic level to the local NHS level.
NHS England and NHS IQ to liaise with carers organisations and the Royal College of General Practitioners (RCGP) in order to support their work on identification, implementation and sharing of best practice models. (Again, I tend to bother the Royal College of GPs because I was interested in an update to the RCGP carer’s strategy when Judith Cameron was the RCGP Carer leads).
Ros responded this would be on the quality markers from NHS England, but there was also recently a series of events from the Royal college of medicine regarding the focus on unpaid carers.
Priority 2 Education, Training and Information
NHS England to investigate approaches to measure the skills, confidence and knowledge of carers and potential benefits on care and carers.
Data sharing: As part of the Patient Online programme, NHS England to scope the potential for carers to access the GP medical records of the patients they care for, where applicable, and the patient has given their consent.
Ros mentioned a huge amount of work has been done on this since 2014, although due to COVID-19 happening she admits work on this has slowed down. Ros states hospitals should have the access to pull patient GP data if a patient turns up to hospitals very unwell and unable to speak for themselves.
NHS England’s new ambitions for End of Life Care, to be published in June 2014, will include the intentions for support for carers and bereaved relatives.
Ros again talked about the personalisation agenda as there has been a lot of work done on this. We spoke about the lead for end of life care who is Sherone phillips, although Ros mentioned there is a regional lead and a national lead for End of Life care.
NHS England to support timely dementia diagnosis and the best available treatment for everyone who needs it, including support for their carers. For example, the revised Dementia Enhanced Service will include an offer of a health check for carers and signposting for information and support.
Develop a programme of work to support the health and wellbeing of carers through the community nursing strategy.
NHS England’s widening digital participation programme to reduce inequalities: ‘100,000 citizens trained in basic online skills to boost health literacy’ will apply to carers as well as patients.
Ros mentioned this is NHS digital and a lot of work has been done on this, but there is more to do.
Priority 3 Service Development
NHS England will promote and work towards parity of esteem for carers so that mental health and wellbeing is considered and supported alongside physical health needs.
Through work on developing the House of Care toolkit, NHS England will work to bring together all the relevant national guidance, published evidence, local case studies and information to support carers to be informed and engaged in care.
NHS England to include carers in work around developing standards and service components for personalised care planning to help ensure carers are integral to the care and support planning process and are consistent with the National Voices principles of care and support planning.
Ros stated this does happen and that it is important to involve the public, patients and carers into the planning of personalised care. A good example is the work done with people with learning disabilities and those that support them regarding annual health checks.
Patients who can benefit will have the option to hold their own personal health budget resulting in direct benefits to carers, including feeling more in control and perceived health improvements.
Ros mentioned this happens through the personalised care.
Priority 4 Person-centred, well-coordinated Care
Scope how NHS England can most effectively support the RCGP and other partners in the work they intend to develop around carers.
I queried if NHS England also work closely with RCGP, RCPSYCH, RCM and others. Where Ros mentioned they do work across different programmes.
NHS England will consider how carers can be supported through commissioning of primary care including through future developments to the GP contract and enhanced services.
Ros mentioned at some point NHS England pulled back from this, but now there are discussions in place.
NHS England to work with NICE and other partners to develop measurement and best practice guidance in order to increase identification of carers.
Ros mentioned this happened last October, so NICE have issued guidence on how carers should be treated and it complementary to NHS England’s quality markers, it should not replace them. (I have posted a link below that might relate to what Ros mentioned).
NHS England to undertake a series of regional evidence summits for carers to establish an independent assessment of the evidence in order to capture, disseminate and encourage good practice.
Ros talked about how the above has happened and has probably morphed into innovated care systems. So this is how NHS England know how Yorkshire, Devon, Surrey have all these brilliant carer strategies, of there are other places as well.
NHS England to maximise opportunities to capture feedback and incorporate into discussions and work to improve quality and inform best practice.
Ros feels this feedback are from monthly calls from carers.
NHS England to undertake a piece of work to understand the impact of current commissioning incentives and system drivers in supporting carers. For example, through the GP contract, revisions to enhanced services for unplanned admissions and dementia.
Ros was not sure, it would be before her time, but it sounds like a one off piece of work, but can follow up on this with us.
NHS England to review current national processes in place to gather bereaved carers’ views on the quality of care in the last three months of life in order to address gaps in evidence.
Where commissioners identify the need for support, co-produce practical tools and a support programme of implementation with NHS IQ.
Priority 6 Commissioning support
NHS England to coordinate effective ways of working by developing partnership links between health, social services and other organisations, including the voluntary sector to establish how carers can be supported as effectively as possible.
NHS England to continue to work with the Standing Commission on Carers.
NHS England to remain a member of the cross government carers strategy board and will encourage and support carers organisations to play an active role in the Collaboration for Coordinated Care.
Establish an annual meeting with key partners including carers organisations to monitor progress and review objectives.
Priority 7 Partnership links
NHS England to continue as a corporate member of Employers for Carers.
NHS England to continue to implement and support established policies on flexible working, leave and emp
There were more discussions raised about NHS England & Improvement commitment to carers, but for more information you can check out NHS England’s Bi Monthly Carers Programme Lunch and Learn Webinar. The link is below.
This was a brief update for my South west London carers forum for July 2021.
Hello fellow unpaid carers. This blog site is geared towards those who support or look after someone suffering mental ill health. I run a number of carer-led expert by experience forums, which focus on unpaid carers regarding engagement from services. Most forums tend to have speakers to engage members regarding mental health system changes or discussing carer awareness.
For the South West London carers forum the following speakers were
NHS South West London CCG – Understanding health Commissioning for carers Dolly Sen – Mental Health Patient/Carer champion Matthew Mckenzie (myself) – The importance of carer peer support
As you might be aware, clinical commissioning groups are merging in their own region as part of NHS England’s long term plan, because my group covers a large area, it made sense for the comissioners to speak to carers from different boroughs in South West London.
South West London CCG presentation
First to speak was Caroline O’Neill who is the Lead Engagement Manager and covers Kingston & Richmond from NHS South West London CCG, we also had John Atherton in attendance who is the Director of Mental Health Transformation for SW London CCG.
John started off the conversation on what the plans are for the rest of the year and going forward. John explained how the 6 CCGs formed in five commissioning groups in South west London. They are responsible for planning, commissioning and buying most of the NHS services in the south west london area. That means hospital care, GP surgeries, rehabilitation clinics, mental health support, learning disabilities and many others.
The CCGs have a healthcare budgets of over £2.3 billion, although carers who attended the June’s meeting were interested in the CCGs mental health pathways and how they were going to include families and carers.
John explained the importance of health checks as those with mental ill health often struggle to get physical health checks and support. John mentioned what happened in the past is people were encouraged by their GP go get a physical health check each year. It is important the CCGs continue to push this forward because there are some service users who had not had a good experience in the past, or they don’t believe in health issues, so they are encouraging people to check at their practice.
A carer reminded the CCG representatives about how difficult it is for people have mental health difficulties to travel especially using public transport. They wondered how this will affect people accessing mental and physical health services for check ups.
I also asked a question to the CCGs regarding is there a simple view of the commissioning structure? Because we have got CCGs doing stuff in 6 boroughs, and then you’ve got merged CCG? So how do people sort of feed into each other on what is going on? The representatives spoke about their governing body and who is on it.
Another carer was concerned about those with learning difficulties with poor health accessing recovery colleges and wondered what the South West London commissioners were going to do about it.
The representatives were pleased to hear SW London and St Georges were promoting the carers forum, but the CCGs also wanted to include our group on developments of mental health services, as the group stressed the carers should be consulted and involved when it comes to service provision. All too often CCGs struggle to get a good number of carers interested in what they do. It could be an added benefit that carers poke their noses into what is being comissioned and why. This is because carers have a vested interest in the health of who they care for, plus carers do actually use some CCG services which could be Increasing Access to Psychological Therapies. A carer member of the group was concerned about the number of carers not being identified and referred to carer services and groups.
An interesting point of the discussion was finding out who were the mental health leads from each of the 6 boroughs, although there is a lot of work needed in developing primary care networks, because some members feel some GP surgeries could learn a lot from other GP practicies.
Dolly Sen presents
It was requested by carer members for Dolly Sen to talk with us at the forum. Dolly Sen is a service user survivor and a carer and has been fighting 20 years for human rights. Dolly mentioned that over the years while trying to keep mentally well, she has been using energies to focus on art, film, performance and even talking about her experiences at other events.
A large part of Dolly’s activism is around the treatment of mental health users, especially around the problems with benefit payments or DWP. She is quite busy working to improve the mental health system in another area where she has moved to. Dolly admitts there are times when nothing can be done on someone’s health and situation, she feels sometimes it is best to be a witness.
A number of questions from members at the forum were interested in how their mental health trust is working to involve more carers in their involvement register. They queried with Dolly about involvement and activism.
Welcome to the update for May’s South West London carers forum. As with all my carer groups and forums, this is aimed at unpaid mental health carers. That being families who are caring for someone with a mental illness or mental health needs.
We were visted by Diane White who is the CEO kingston carers. This was one of the carer centre leads to engage with carers the past 3 months as Richmond, Sutton and others have been talking to carer members about each borough’s carer strategies. Not all London borough’s have carer strategies, but when they do have strategies or a focus on carers, then it means carers get a chance to see if it has made a difference in their lives. A carer strategy is also a good way to hold boroughs on their promise and committment to unpaid carers.
Diane White did not speak much regarding carer strategies since the borough of Kingston is developing their carer’s strategy as of present. Diane spoke about the support Kingston carer’s centre provides for unpaid carers. She also mentioned the challenges they have considering covid-19 and budget restrictions.
The second half of the forum was focused on important questions a carer would need to ask if the person they were looking after starts using mental health services. Most of these questions should be asked at ward rounds, care planning approaches, tribunals or carer assessments. The idea I talked to the group about such questions if for empowerment purposes, besdies such questions are provided by the Royal College Of Psychiatrists.
Patients, service users or mental health survivors should try examining such questions in preparation to ask them.
About the illness
What is the diagnosis or problem?
If a diagnosis has not yet been made, what are the possibilities?
Why has this happened to them?
Will they recover?
Why ask these questions as a carer?
When I started out as a carer, I did not understand what I was caring for. All mental health conditions affect the person differently, as someone with an eating disorder will behave differently from a person who self harms. It is very important to understand and educate what conditions you are caring for.
If a diagnosis has been made
What symptoms suggest this diagnosis/illness?
What is known about the causes of this disorder/illness?
What is likely to happen in the future? Will it get better or worse?
Where can I get written information about this disorder?
Why ask these questions as a carer?
Now that you might know the diagnosis, there is a chance it can help with further questions. The questions above are very good and you might not be able to ask such questions in one sitting, thats impossible, but you later on down the line you will have a chance to ask them. Out of all the questions on this blog, these ones should be the most accessible since there should be leaflets and booklets on the ward about mental health conditions. It does help if the doctor or psychiatrist explains things in more detail, especially the severity of the condition.
2 About the assessment
What assessments have already been done?
Are there any other assessments that might be needed?
Are there any physical problems that have been discovered? If so, what will need to be done?
Have culture and background been considered?
Why ask these questions as a carer?
These questions are tricky and usually not asked straight away, I think this could be due to challenge to diagnosis or to seek a second opinion. Nevertheless they are important questions, wrong assessments do happen and can ruin the life of a patient and their family. Notice one of the questions focuses on BAME aspects.
3 Care Programme Approach (CPA)
What is the CPA?
What does the CPA mean?
Is the person on the CPA? If not, why not?
Will I be involved in the CPA?
Looking for a counsellor?
Why ask these questions as a carer?
Vital to ask these questions, there are situations CPAs are pushed back or do not even occur. If you are lucky enough to be included in a CPA, it is a good chance to ask about them and there format. CPA’s are quite long important meetings and usually done once a year. Preparing for them is a must and certainly make sure your loved one gets a copy of their care plan otherwise there is no plan for recovery of living with the condition. If you are unlucky not to be involved in a CPA, perhaps ask if your loved one take a advocate to the meeting. The reason for this is if the person you are caring for is still quite unwell, then important questions at the CPA might be unresolved or misunderstood by the patient.
4 About care and treatment
What are the aims of the care and treatment?
What is a care co-ordinator?
What part will the care co-ordinator play in the person’s care?
Who else will be involved in the treatment?
What is your plan for treatment?
For how long will they need treatment?
Would talking treatments (eg, cognitive behavioural therapy, family therapy) be helpful? If so, are they available locally?
What happens if they refuse treatment?
Why ask these questions as a carer?
Some of these questions can actually or should be asked within a CPA metting or can be aimed at the social worker or care-coordinatator. Take note that plans for care can change down the line, so be prepared to repeat these questions in the future. Why would care and treatments change? because the condition of your loved one will change, unfortunately be prepared for worsening conditions, but it helps to be flexible even if we hope for recovery. Do also focus on physical health treatments rather than always on mental health because both are related.
5 Sharing of information
Have you asked them about how much information they are happy to share with me?
Will I be informed about important meetings concerning their care and treatment?
Can I see you on my own?
Would you like to ask me for any other information about them or the family?
Can I tell you things that will not be shared with the person or other members of staff?
Are their views on confidentiality clearly marked in their notes?
Why ask these questions as a carer?
Out of all the questions off this blog, these are the most important and if the answers are recorded then it will help you later on down the line. If the relationship with your loved one suffers “probably due to the condition” then its highly likely they do not want you involved, but it MUST be recorded why, plus mental health system need to be flexible to involve the family and carer enough or the pressure is back on services to admit the patient again and again. Please also notice mental health services MUST understand carer confidentiality since that is one of the mistakes that can cause patient to turn against their family.
6 Care and treatment
What can I do to help?
Are there any local self-help or carers’ groups that can help me understand the illness?
How can I get advice and training in the day-to-day management of the illness?
Are there any local groups that can provide support?
Why ask these questions as a carer?
If there is anything that I stand for, it is for carer networking, peer support, empowerment and carer connections. The golden rule of caring is do not cope by yourself. So it is important to link up with other carers and carer advocacy and support. Mental health services should identify you and refer to their own carer groups and others.
7 Getting help
How can I get in touch with you?
How do I arrange to see you?
Who do I contact if I’m worried about their behaviour?
What do I do if I’m worried that they are becoming ill again?
Who do I contact in an emergency? What help might be available?
How can I get a second opinion?
Why ask these questions as a carer?
These questions are useful for emergencies as well, as with a triangle it is important carers do not get locked out of contact, one of the many criticisms of mental health services is lack of communication and lack of contact, especially when things begin to fall apart. Get the answers and record them down or you will be lost.
What is the difference between a carer, a nearest relative and a nominated person?
I understand that, as a carer, I am entitled to an assessment and care plan of my own. Who should I speak to?
If I have specific needs of my own, who should I ask?
If I need help, to whom should I turn?
Why ask these questions as a carer?
When I started out caring, I did not even know I was a carer, nothing wrong in that, except you lose out on carer support. Many people are not fond of the word carer and will prefer supporter, friend or other named definitions, but as it stands there are laws to protect unpaid carers like the “Care Act 2014”. It is unwise to avoid asking such questions because looking at the page of questions alone will leave you lost. Get that carer’s assessment, because it will record your circumstances and protect your rights if things go wrong, do not think you obligated to care, but certainly protect your rights as a carer.
What medication is to be used, and how?
Is the lowest effective dose being prescribed?
Can a low dose be taken at first and increased if necessary?
How often will the medication be reviewed?
Will I be involved in future discussions about the dose or type of medication?
What should the benefits of this medication be?
In the short term.
In the long term.
What are the possible side-effects of this medication?
In the short term.
In the long term.
Why ask these questions as a carer?
I think these questions are the ‘elephant in the room’ so much boils down to how medication helps with recovery or the ability to cope. The wrong medication and mess up your loved ones life and I will cover this later, even with good medication certainly expect side effects. Ask about side effects now, so you know what to look for and do not expect your loved one to suss out what is always going on.
10 Managing the medication
Why have you chosen this particular medication?
How long will the medication have to be taken for?
Are there any other medications that could be used if this one does not work?
What symptoms might mean that the dose should be changed?
What should I do if they experience unpleasant side-effects?
What will happen if they stop taking the medication?
Do you have any written information about this medication to give me?
Why ask these questions as a carer?
Not all medications are alike in ability and quality. It is your right as a carer to challenge medication if you suspect they are going to cause more problems than the condition itself. Certainly explain to your loved one the importance of understanding medication, but there will be times you might have to take a step back and ask services to help out or explain about medication. These questions should hold them to account on their decisions.
11 Hospital treatment
Do they need to be admitted to hospital? If so, for how long?
If they have to go into hospital, which one will it be?
Will they be on a locked ward?
If they get short-term leave from hospital, when and how will I be informed?
How often will I be able to see them?
Why ask these questions as a carer?
These questions might come after an assessment, especially if the family insisted on a mental health assessment. There is nothing worse than having a loved one admitted and not knowning what is going on. Please ask these questions if the person you care for is due to be admitted.
12 Discharge from hospital
What arrangements will be made for their care and monitoring after discharge from hospital?
If I am not able to look after the person when they are discharged, what will happen?
Am I expected to help with anything, especially medication?
Do you know of any self-help techniques that will help their recovery?
Why ask these questions as a carer?
What is worse than being admitted without much notice is when a loved one is discharged and you do not know about it, especially if they are still quite unwell. So asking such questions should involve you in discharge so they dont end up on the ward in a hurry again.
Welcome to the South West London Carers forum. One of the new carer forums I co-chair along with another member who is on the involvement of South West London & St George NHS Mental Health Trust or SWLSTG for short. The carer forum is a hybrid of the other carer groups I run. What I mean by that is somethings us unpaid carers meet together and chat about how things have been going for us. Then other times we have selected speakers inform, educate and engage with us about mental health services and involvement in health and social care. The SW London carers forum started last year (2020) mainly as networking and peer support.
For the March SW London carers forum. We are continuing to seek more engagement, especially when it comes to carer strategies. The carer forum is easily one of the furthest reaching group, since SWLSTG covers mental health services in 5 boroughs that being Merton, Kingston, Richmond, Sutton and Wandsworth. A good thing about those boroughs is I have good relations with all the carer centers and one of them is contributing to my new book.