A new research study by Cassie Lovelock will be looking into the identity of those who support someone in their life with a mental illness. Cassie is PhD student at the London School of Economics; before that she was a carer for her sister who lived with schizoaffective disorder.
The aim of her study is to learn in what ways supporting a person impacts a carer and their identity. As well as what their day to day supporting that person looks like. This will be done via an hour(ish) long interview with her via zoom or teams (or telephone if that is easier for the carer). It will take part at a time convenient for unpaid carers.
To take part the carer must be over the age of 18 and able to give informed consent. Unpaid Carers will be paid £30 for the interview – or thy can request a voucher to the same value.
If any carer other there is willing to make part – or would like more information before deciding please email Cassie on firstname.lastname@example.org or you can text/whatsapp her on 07429428992.
For the video version of this blog, please watch below.
Well before I talk more about that, lets understand what a carer is first. When I say carer, I often mean unpaid carers and of course caring for someone you love and are connected to should be the pinnicle of what makes a caring community, but with caring comes added strain and stress, especially with the pressures on health and social care.
So with those added pressures, it is important unpaid carers know their rights. This is just one of the reasons unpaid carers and those that work with them should pay attention to Carers Rights day 2021.
The whole idea of carer’s rights day is
Making carers aware of their rights
Letting carers know where to get help and support
Raising awareness of the needs of carers
So under the carers rights act 2014.
Carers have the rights to
A choice as to how your personal budget is managed.
A personal budget to meet any ‘eligible needs’
Be helped to develop a carer’s support plan Have an assessment of your own needs as a carer (either jointly with the person you care for or separately)
Have your say if you are no longer prepared to care, or are not prepared to do an element of caring
Have your views taken into consideration by health and social care services when supporting or treating the person you care for
Specific advice and information for carers that you can understand
Of course There is no legal obligation to be a carer as unpaid Carers have the right to choose to provide care.
However it is also important that most people are compelled to care because of experiences with a health & social care system under strain. So if you are an unpaid carer and even if you miss out on carers rights day, then please check out the links below my video.
Welcome to a quick blog from carer matthew mckenzie. Just last night I went to the excellent (Health Service Journal) HSJ Awards 2021.
Taken from the HSJ website – The 41st HSJ Awards culminated in a ceremony shining a light on healthcare excellence at Evolution London. From senior leaders to front-line staff, all finalists have been a source of life-changing and much needed work sharing best practice, improving patient outcomes, and being innovators of better service.
As we all know due to the pandemic and a few other things, the NHS is under immense pressure and whatever pressure the NHS and social care suffers from, it does not take long before unpaid carers take on that added strain. Many patients and unpaid carer’s are often forgetten and although awards are necessary, it is so important to award the work done to identify, support and keep track of the many millions of unpaid carers across the country.
The entries for 2021 were very impressive and numerous as many healthcare systems took up the challenge. For those who managed to get their projects to be judged, I can say there are all winners, but unfortunately there can only be one HSJ winner.
As one of the judges for the entries I felt I learned a lot on the system led carer category. I found out how dedicated the healthcare professionals were in pairing up with stakeholders and those who support unpaid carers.
The judging process was led by Jennifer Kenward who is the senior NHS England lead for experience of care, which is a much needed role for increasing the identity of carers all around the country. You can read her blog in the link below.
I was a bit late arriving to the event due to fighting with my bow tie, but the venue was easy to get to from pimico underground station. I was worried about the covid situation of such a large ceremony, but the way the event was run, everything was strictly monitored.
As a judge we were placed on the front tables to get an excellent view of the awards hosted by the brilliant Sue Perkins who is a great British icon and is passionate about the NHS. The food was excellent and HSJ staff looked after us very well.
I managed to greet friends and partners from Carers UK, Carers Trust and NHS England as well as fellow judges. Obviously I gave them a signed copy of my book (I never miss a trick).
The winner for our category ” System-Led Support for Carers” was “Care for the Carers” on their Intensive Support to Carers in Hastings.
The highly commended award went to West Yorkshire and Harrogate Unpaid Carers Programme, Covid-19 Vaccination Programme for Unpaid Carers.
You can find out more about Care For the Carers off their website below.
All in all, I felt very previllaged to be included as a judge for the HSJ System-Led Support for Carers category for 2021. A very challenging year for the NHS and also challenging for unpaid carers, but entries for such awards set the standard for others to follow. I urge those across the country to take up that challenge and care for the carers.
Well done Care for the Carers, your HSJ award is historic.
Welcome to the September update of my joint Southwark & Lambeth mental health carer forum for 2021. This is just a brief update since I have been rather busy at work, but for those who couldn’t always attend the forum, I often try and blog any updates if I can.
The speakers for september are as follows.
Rohati Chapman Executive Director of Programmes and Impact for Carers Trust Lambeth Carers hub new mental health carers lead.
Peer group updates
Usually the carer forum makes time for speaker engagement, but this time we decided to check up on how we are coping through the pandemic in a peer supportive manner. There were updates from the attendees on the pressures of providing care regarding challenging access through health and social care.
Rohati Chapman presents
After the peer group catch up, Rohati entered the zoom meeting and presented on her role as one of the executives at the National carer organisation “Carers Trust”
It was great for Carers Trust to engage with unpaid mental health carers from Southwark and Lambeth. Since Carers UK sometimes attend our carer forums, where they are due to attend for November at my South West London carers forum. Rohati in her new role drive the Carers Trust’s programmes this includes Triangle of care, she also has a big impact for Carer’s Trusts Network Partners as in carer centres and carers.
Rohati mentioned she had been wanting to make it to one of Matthew’s carer forums and she is happy to attend the Southwark & Lambeth forum since it is in her area and rather local. She was happy to take any any questions and also happy to give us a bit of an overview of what Carers Trust are doing. Rohati did mention it is unfortunate that both Southwark carers and Carers Lambeth Hub are not a network partner, nearest carer’s partner actually is Wandsworth carers centre, which on a good note is covered under my SW london carers forum. Rohati menioned the other carers trust partners are Carers Lewisham and Bromley Wells.
Rohati was interested in what support are you getting? as in what is good and what’s not. This is where she will take back info to her colleagues in the network development team.
There was a very long discussion about the challenges of mental health carers, plus what is working and what could be useful. I pointed out that mental health carers tend to lack peer support and advocacy when it comes to mental health services. These type of support can even be a challenge to service users or patients, but we cannot forget that carers and families often need advice if carers are intimiated by processes and procedures from health and social care. Another thing that was raised was referrials to carer peer groups as referring straight to a carer centre does not always cut it. There was talk regarding social prescribers and GP surgeries needing to up their game in identifying carers and referring them to peer groups so that way carers can look after each other. Members of the forum are aware that GPs are under pressure and they are also aware that primary care networks are developing, but too often social prescribers focus on older adults and there needs to be a push to identify mental health carers.
Other suggestions were mental health officers at GP surguries to speak to families and carers and GPs and accute hospitals to link as much as possible to the local mental health trust.
Rohati finished up by mentioning network partners have increased access to funding and with those funds it can help develop support for local unpaid carers.
To find out more about Carers Trust see the link below.
A brief update is that Karen Ibrahim is now the mental health support lead at Carers Hub Lambeth, this means that mental health carers continue to have a dedicated carer support from Lambeth. Karen talked more about her role and how the Lambeth mental health carer peer group will help support carers in that borough. As I often attend the carer peer group over at Moasic Clubhouse, I look forward to development of the carer network.
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.
Welcome back to another blog by unpaid carer Matthew McKenzie. I am slowly breaking into the world of becoming an author and I am pleased to announce my 2nd book on the experience of caring is out.
The title of the book is called : Experiencing mental health caregiving – Unpaid Carers
Obviously due to my previous role caring for my mother, this 2nd book focuses on mental health carers. What I mean by that is getting views, statements and comments from those who look after someone suffering mental ill health. The book is not to be taken as an audit, but a philosophical look at experience of care, I wanted those to be philosophical on their experiences of being a carer and anything mental health related. There will be comments that stated facts or sometimes seem like a pitch, plus some comments might offend some people, but it is very important to just get the voice out there and understand why someone would comment in such a way.
I am known for my networking to carers and this was the nature of this book. I wanted the book to be a link and connection to other unpaid carers, this is so that there is some form of identity for carers and a way to relate to the experience of care. The book is very large with over 300 pages and 33 chapters. The book however was quite challenging to compile experiences, because quite a few comments brought me back to when I was a mental health carer and some things hit hard.
To research the content for my book, I had to approach many mental health trusts and carer centres to promote my project and I thank those that have contributed.
Many thanks to CNWL, West London Health trust, Nottinghamshire Healthcare NHS Foundation Trust for their lovely newsletter, Cambridgeshire and Peterborough NHS Foundation Trust and many other mental health trusts allowing me to present about my project.
I also approach universities especially those who taught psychiatry, psychology or those who led on social care courses. I wanted their opinions as well, because if you want nurses, social workers, doctors and psychiatrists to work well with carers, you have to start where they are being taught their profession. I did want to include contacts from large organisations, but it was too difficult, although I do hope they support and promote the book. If anything is going to bring changes to the experience of care, it needs to be the voices of carers being amplified.
Next year, I certainly want to expand on the chapters I wrote in this book especially regarding the views given by those who contributed, however before I undertake my next project. I want to try my hand at poetry.
Welcome to the September update of my Lewisham mental health carer forum 2021. As a note, the carer’s forum is an engagement group aimed at those caring for someone who suffer’s mental ill health.
Since the carer’s forum focuses on carer’s from Lewisham, we tend to get engagement from mental health services of South London & Maudsley NHS foundation trust. I am grateful for the support our local NHS trust gives to families and carers. It is important that families, friends and carers remain that strong link in coping and recovery.
The speaker’s for September were
Leonie Down – Lewisham Head of Occupational Therapy and Partnerships Lead from South London & Maudsley
Ros King – Regional carer lead for London from NHS England
Charles Malcolm-Smith – People & Provider Development Lead from NHS South East London CCG (Lewisham)
Leonie Down presents on the importance of Occupational Therapy
As mentioned earlier, South London & maudsley prides itself on the engagement and involvement of those who use it’s services and those who care for patients. It was great to have Leonie engage with our carer group on the importance of Occupational therapy.
Leonie stated her talk on how occuptional therapy can help people manage their routines at home, and also occuptional therapy helps look at the physical health component and ways for people to adapt to disability. Leonie presented an example from The World Federation of occupational therapists (WFOT).
“Occupational therapy is a client-centred health profession concerned with promoting health and well being through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. Occupational therapists achieve this outcome by working with people and communities to enhance their ability to engage in the occupations they want to, need to, or are expected to do, or by modifying the occupation or the environment to better support their occupational engagement” (WFOT 2012)
Leonie admitted the defination was a bit wordy, but it does encompass the fact that it’s about activity and occupation and that’s the medium through which Maudsley NHS deliver their interventions.
Leonie has worked as an OT for around 30 years, a lot of people ask her, what’s an OT do? So she often responds that it’s about supporting people to do the things that makes them feel better. So it’s very much about what people spend their time doing, what people feel, what activities that make people feel feel better, make them stronger in themselves, plus setting their direction towards recovery. As an OT, it’s a degree that they have three years in training as an occupational therapist, which ultimately equips them to be able to understand the needs of each individual. These could be what strength and barriers might be around the person or being able to access activities that make me feel better, and that could be multifaceted.
Leonie then presented on the following, where how can service users benefit from OT. The following points were explained.
How OT promotes self-expression, creativity and the development of hobbie
Where OT can improve / develop
feelings of self-esteem and confidence
level of self-awareness, understanding and insight
ability to manage health conditions and ADLs
social interaction and communication skills
coping strategies and self-management techniques
How OT supports the development of roles, responsibilities and routine, as well as identifying and working towards goals
Promotes healthier lifestyle choices and greater levels of physical activity
Increases the chances of an earlier discharge and the likelihood of them being able to remain safe and independent in the community
Improves the patient experience and wellbeing.
Leonie then moved on to present the work being done in Lewisham regarding OT, where they are trying to work with as many social inclusion partners as possible. So one half is Lewisham community connections, where people are helping those using the services navigate through to something that they can be doing to help their health.
The other aspect of OT in Lewisham, is very much about trying to co-produce and co-deliver a program of groups. Which is for people that that may benefit from the environment that involves other people. This is because other people, from the same environment can learn or hear different insights, which can lead us to start making sense of our own experiences and possibly develop tools to become self reliant.
There was then a Q&A session from carer members of the Lewisham MH carer forum.
Ros King from NHS England speaks about ICS changes
Ros King kindly engages with my carer groups when she can, so today she was invited to speak about the important of Integrated Care Systems. Ros started explaining about NHS England and how it is a huge organization and can be very complicated. Ros mentioned how NHS England is basically the body that sets health policy with the department of health and social care. Such policy helps plan for what the health service will be focusing on where It also holds allocated budgets. The budgets are then allocated down to CCGs where Ros explained that there has been quite a few changes.
It was explained that a couple of years ago, the responsibility was around Clinical Commissioning Groups, and NHS improvement was concerned with providers, so acute trusts and some changes were implemented which led to a merger to become NHS England & Improvement.
Ros then explained a bit about The national teams and the regional teams. Where there are seven regions across England. As in other countries just NHS England we have Wales, Scotland, Northern Ireland, which have different arrangements.
Ros talked about the London region and what sits within the London region, where there are five integrated care systems. These being Southwest London, southeast London, North Central London, northeast London and northwest London. Ros joked that she really hopes nobody has any questions around which CCGs sit within such ICS because that would take some time. Ros talked about how the CCGs have merged to cover such regions around London.
Ros moved on to talk about how NHS England & Improvement would demand lots of information, especially very complicated information about how the CCGs and providing trusts were performing in all sorts of areas. Such requests for information could be at a very short notice because those at NHS England & Improvement have to feed this info back to the organisation.
Ros felt there has been a lot of changes as to whilst regions do still have accountability, So if an acute provider in Lewisham, has really serious concerns and risks about performance of the quality of the services they’re providing, then it is still very much NHS England regional team responsibility to manage and try and work with the provider to improve.
The idea is rather than an acute provider struggling with performancing issues, they should learn from other providers and network together. Still, NHS England has commissioned a lot of things, but now only comission small amount of services which are specialist services. These will be transferred out into ICS.
Ros then talked about how they manage complaints around a primary care service. So GPS, dentist, ophthalmologists, pharmacists and so on. Such complaints would come in to NHS England depending on the complaint e.g. if you have a complaint about any of those services, it would come through to NHS England, or if you had a complaint about a service that was commissioned by your ICS, or your CCG, that would go into the CCG or directly to the organization that’s providing the service.
Charles Malcolm-Smith presents on ICS at a local level.
I had a lot of support from engagement representatives of NHS South East London CCG where Greenwich, Southwark and Lewisham CCGs had organised what to present to carers and also who can support Ros Spink’s presentation.
In the end Charles who is the people & Provider Development Lead from NHS South East London CCG (Lewisham) continued the presentation.
Charles talked about what integrated care system changes that are in the pipeline and how they are designed to work together better. With all the talk about health and social care needing to work better with physical and mental health services, community acute services and primary care, it’s all about the different parts of the system working together and this is about structural change.
It was explained that we have had integrated care systems for a while, but their status had changed from the sustainability and transformation partnerships, where they became ICS even though it is still a partnership status, with the health and social care bill now making ICS statutory organisations. Charles explained that there will be four building blocks to do an ICS. So the ICS for southeast London will have an integrated care partnership board and this is the alliance of organizations that represent across southeast London. These will include the NHS organisations, local authorities and made up of the chairs of the trust.
Elected representatives and elected leadership from each of the local authorities as well as the representative director from Adult Social Care, children, young people services, Healthwatch and voluntary and community sector organizations. Charles reassured us that in southeast London, there aren’t any private sector organizations involved in the partnership since there were a lot of questions from members about privatisation creeping in.
Charles talked about how the Integrated Care board brings the NHS together so it brings commissioners and providers around the table. Charles mentioned it was an important development because the last couple of decades, it has always been a commissioner and provider that were split causing queries with contracts. although there will still be commissioning and providing but the approach to it will be about joint planning. So there will be working together more closely than before.
There were many questions from carer members on if the Local Care Partnership board will debate the importance of unpaid carers and include them in their decisions.
This concludes the brief update of my Lewisham mental health carer forum for September