Category Archives: Carers Lewisham MH Forum

Lewisham Mental Health Carers forum October 2021

Welcome to a brief update of my Lewisham Mental Health carer forum for October 2021. I know I am behind in updating people about my carer forums, but I have mainly been busy working on my 2nd book. I am glad to say the book “Experiencing mental health caregiving – unpaid carers” has been published and can be bought on Amazon.

For the October carers forum, the following speakers were

  • Martin Crow – Business Manager – Lewisham Safeguarding Adults Board
  • Cath collins (carer support officer) – Triangle of care
  • Eunice Adeshokan (Matron Acute Inpatient Services) – Carer engagement at Ladywell Unit

I also was going to do an online carer’s quiz for members, but only if there was enough time during the forum, plus I have to run my Greenwich MH carers peer group after the Lewisham mental health carers forum.

Martin Crow – Business Manager presents on Lewisham Safeguarding

Martin Crow sits on the board for the borough of Lewisham Safeguarding. The Lewisham safeguarding board was established statutorily in April 2015, to meet the requirements of the Care Act 2014. Although Lewisham had a safeguarding board in Lewisham, for many years before the Care Act, it was put on a statutory footing for the first time in 2015. The board has the responsibility for setting the strategic direction of Adult Safeguarding cross the borough of Lewisham, and is made up from over 20 organizations. But the three statutory partners are the police, Lewisham council and the clinical commissioning group southeast London CCG. So the key public sector partners, as well as other voluntary and community sector partners are involved in the safeguarding board. In the end it is their job basically to oversee the approach that the safeguarding board have, collectively, to ensure that adults are at risk of abuse, neglect are supported and protected in the best possible way.

Martin feels the key thing is that safeguarding is everyone’s business. So it’s not just about those 20 organizations, it’s about any organization that delivers services to adults at risk. It’s about adults themselves, and it’s very much about carers as well and not just the patient or service user. So the job of the board is to engage a very wide range of people from different communities across the border. This is so we can all help to play a part in protecting those most at risk. So part of Martin’s job is to is to help to reach out to different communities, organizations and work closely with them and in partnership with them.

Martin gave us an overview of what Adult Safeguarding actually is and about the word safeguarding can be used in many different ways and in many different contexts. For the broadest possible way really to think about Adult Safeguarding is that it’s about people. It’s about organisations and it’s about working together to prevent and stop off the risks and experience of abuse and neglect. So it’s not just about thinking about when things have gone wrong.

Martin mentioned that when people have experienced abuse, it’s thinking about the risk of abuse. It’s very much about prevention. so when the Care Act came into force in 2015, prevention really was really brought to the forefront because in Adult Safeguarding terms prior to that, there was too much focus really on protection about when something had already happened (which meant it was too late). The intention of the care act was to turn that around to say that there should be more focus on prevention.

What Martin was seeing around safeguarding is that it is everyone’s responsibility. The only way that people can hope to achieve those things in terms of prevention and stop the risk of abuse is by working with the whole community approach.

In Lewisham Martin mentioned that we have many organizations that run specific services, there’s probably over 500 organizations in Lewisham delivering services that can be a risk.

Martin spent quite a while talking to carer members about the types of safeguarding abuse and what the causes would be.

Cath Collins presents on SLaM NHS triangle of care

Cath Collins is Lewisham council’s carers support officer who works closely with South London & Maudsley’s NHS foundation trust. She was here to present and raise more awareness of the triangle of care and how it can be used for mental health services in the borough. Cath asked members what they knew about the ladywell unit, which is SLaM’s inpatient psychiatric ward and part of Lewisham Hospital. This is where anybody who needs to go into hospital suffering a mental health crisis could use in terms of going into a mental health Ward.

Cath mentioned that the triangle of care has been around for at least over 10 years, possibly longer. It’s a form of excellent practice when working with carers and families or in a mental health setting. For South London & Maudsley they are going to focus on the wards initially because that’s where when the triangle of care was formed, that was its first focus, it was put together by a carer Alan Worthington.

Alan developed a good practice guide on the back of his own experience while visiting his son in hospital. So the practice actually comes from a carer’s perspective, which has expanded to around 50 Mental Health trusts in England that have signed up to it.

Cath talked about the problems of not using the triangle of care, which provided the following challenges.

  • Carers being excluded at certain points of the care pathway
  • Failure to share information on risk assessment and care planning (see SUI reports and recommendations)
  • Requests by carers for information, support and advice not heard
  • Carers unique and expert views and history of the service user can be missed

She then mentioned some of the benefits when the Triangle of care is implemented for mental health services.

  • Clarity over matters of disclosure from service user to carer
  • Increase in identification of carers and referrals to carer support services
  • Increase in communication from more carers attending care planning meetings and ward rounds
  • Reduction in complaints and increase in compliments
  • Increased enthusiasm from staff

The triangle of care requests strict self assessment from wards, staff and community settings, this goes to insure things are implemented correctly and this helps staff recognise what key areas are needed for improvement.

Eunice Adeshokan presents on Carer engagement at Ladywell Unit

Eunice who I have known a very long time stepped in to co-present on carer’s awareness training at the inpatient ward. She mentioned that carers awareness training on a system has been done via an online system for staff. It’s about no less than an hour training, but a lot of work needs to be done to improve training. So one of the plans that SLaM has got in mind is to make sure that know their staff are carer aware and encouraged to complete this training and more.

Eunice talked about how they currently engage families and carers on the inpatient wards and what challenges have been taken up. Eunice will be back in January 2022 to talk about their event regarding triangle of care and serious incidents, which I have been involved in developing.

This concludes my carers mental health forum for the borough of Lewisham

Lewisham Mental Health Carers forum September 2021

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

Lewisham Mental Health Carers forum August 2021

It has been a long time coming since I have been so busy on writing my 2nd book which is title “Experiencing mental health caregiving – unpaid carers”. I have decided to take a break on my book and do another blog update. As usual I host many carer support groups and carer empowerment forums. This blog post is an update of my Lewisham carer forum.

The speakers for August were Denis Muganga who is the Service Manager for Lewisham In-Patient MH Services and works at South London and Maudsley. Denis is also deputy head of nursing at the mental health wards in Lewisham.

Denis spoke about Reducing Prone Restraint on Lewisham Acute wards. Many families and those caring for loved ones are often worried about the risk of restraint on mental health wards. Once a patient is in the care of mental health inpatient services then it is out of unpaid carers hands and we have to take a step back.

Continue reading

Lewisham Mental Health Carers forum July 2021

Welcome to the July 2021 update of my Lewisham mental health carers forum. The forum focuses on engagement for families and unpaid carers who care for someone suffering mental ill health. The ‘cared for’ does not actually have to be using mental health services, but it is important there is a platform for unpaid carers to learn about mental health support, understanding mental health and what is available for carers themselves.

Speakers for my July carers forum were:

Phoebe Averill – PHd Student at Kings College
Polly Pascoe – Lewisham CCG
Carla Fourie – SL&M director of social care

  • Phoebe Averill presents on her latest study.

First to speak was Phoebe Averill who is a PhD student at King’s College. She is working with South London & Maudsley NHS Trust (SL&M) on a research study and she wants to hear carer member’s thoughts and also invite anyone that might be interested in taking part in the research study. She is looking at safety of care in the community mental health services. Phoebe gave my forum a bit of background information about what the problem is. Basically safety in general hasn’t really been given much attention in mental health services. Historically, when you compare it to kind of physical health care services, where we’ve now got quite a good idea about how we can make care safer, what types of interventions and strategies might be needed. Still, there is a small kind of body of research and interventions coming out more recently. These are mainly focused on inpatient mental health services and unfortunately community mental health services have been a little bit left behind, even though that’s where the majority of people who are actually receiving care.

In recent figures, people were using community mental health services rather than inpatient services. So it’s really important that safety is kind of better understood in the community context, so that strategies can be developed to make the services safer. And that’s what she is trying to get started with this research research. Pheobe is currently trying to speak to family members and carers of adults who are using community based mental health services, to find out a bit about what they think about what safe and unsafe care means in this context, because it’s not really well understood. This is due to the types of safety issues that the carer is worried about in relation to the person that they support.

The way the study works involves speaking to her in a either a one to one interview or group discussion with other carers if there was interest from several people in taking part. And there aren’t really any right or wrong answers. It’s really just about hearing carer’s point of view. Carers have so much knowledge about the person that they support and their experiences of care. And it’s just really important that their views are incorporated into any efforts to, to make services safer.

  • Questions from carer members.

One question was focused on the issues of patient’s age. The carer felt that a 75 year old patient does not have the same issues you’d have with a 25 year old and they were curious to know, what Pheobe would be doing for older adults when it comes to community work? Especially for the carer because there’s a lot of issues with older carries with physical issues. How will the research be monitoring those patients or those carers?

Pheobe responded that unfortunately for this study, we’re only looking at sort of general adult services. So we’re Other than older adult services, like you mentioned, it’s not because it’s any less important. It’s just that at the moment, there’s the most kind of research knowledge in adult in adult safety. so future studies would be needed to look at older adults, because there’s like you mentioned, there’s lots of really important safety problems there.

  • Statement from myself

After some debate I mentioned that one thing in regards to research is that whatever is found out could lead to recommendations, usually, most research initiatives tend to recommend some findings that will have this influence services. A lot of people feel research is done for either funding on does not solve service issues, but I pointed out researchers are not in charge of mental health services.

  • Polly Pascoe – Lewisham CCG Presents

Polly spoke about her work within Lewisham Borough Council and southeast London CCG. Her role is it was called integrated Commissioner for mental health pathways. In essence, one of her key roles is getting us to use future systems across mental health care, while it’s occurring across healthcare in general, her focus is on mental health especially within Lewisham. This is kind of where we’re hoping to head moving forwards. The previous system, that being health and social care worked separately regarding statutory and voluntary. Such as Provider sectors were working separately and sometimes even competitively where age groups were handled separately, and such services provided different levels of focus and funding. Conditions were often handled separately, and there was a strong focus on outputs as in numbers, rather than changes necessarily. So there used to be a strong focus on reaching particular targets, on how many people were seen and how many people were funded by CCG.

Now Lewisham CCG have made some definite headway in Lewisham to becoming much more integrated in the way we do things. Of course it’s a journey. So we’re certainly not there yet. Still, Polly was sure a lot of people will have experienced a number of different frustrations around how the system’s working. She feels we are becoming a more integrated health and social care system. Where we are working much more closely with our sector providers. It’s not just the big players e.g. (SL&M), Lewisham CCG is also connecting into our community organizations and age groups do remain relatively distinct. Often the way we do things will mirror that which isn’t always appropriate until the impacts of concurrent issues are understood. So we do have a clearer idea of how different conditions work with each other, but they are still seen often as separate conditions.

At Lewisham CCG they are certainly moving towards a focus on improving outcomes, but they do still have quite a heavy target focus. Those targets are becoming more appropriate as Lewisham CCG move forward. What they are heading towards is a future system where health and social care workers one, and Lewisham CCG are focused on the individual rather than on our kind of organizational boundaries, let’s say, Lewisham CCG want to move between statutory and voluntary services. So between the NHS Trust’s and then any services working in community to be visible, Lewisham CCG don’t necessarily want people to feel they’re being handed off to different places all the time. And they want people to have their personalised journey where movements between that journey feels very seamless. They also want to move to an all age approach where the CCG see the individual as experiencing certain things throughout their lifetime.

So this is also moving beyond comorbidity, not just recognizing people’s potential health issues, but understanding wellness, and looking at their life, and how the CCG can ensure that the way of living and that the way people around them, treat them and work with them ensures optimum wellness, rather than just the absence of ill health, which is one of Polly’s key findings on commissioning and delivery. So this is the way that the CCG design and make services happen. Lewisham CCG deliver those services to people where it is outcomes based and focused. So we want to move away from numbers of people, and move towards the difference we make to people. So that’s the kind of very much that future system Lewisham CCG is working towards. Polly admits she has one very small part to play in a really huge system. And, in essence, this is kind of where she sits in and amongst everything else. Her area is primarily adults and older adults. So she continues to do look at these two areas, predominantly for herself and her team.

  • Carla Fourie – SL&M director of social care presents

Carla started off talking a bit about herself and when she was appointed in February this 2021, although some people will say that they sure they saw her prior prior to this year and that’s true. She started on secondment with the trust last year literally just a few weeks before the initial lockdown. Eventually the role was made permanent, and she applied for it. She was then formally appointed in a full time role in February this year. Carla looked at putting the slides together and thinking about how she could describe what her role is at the trust, she decided, looking at kind of the role to group it into four key categories. As the most senior social worker in the trust, she works closely with NHS trust board and she works closely with SL&M senior managers, to bring a social work perspective, to the NHS trust. So when we look at our multi professionals within the trust, we’ve got our doctors or nurses and OTS, etc.

In the end Carla’s role is to bring the social worker perspective at a the senior level, she has also the responsibility to work across the trust with the different local authorities, and to ensure that SL&M avoids working in silos, so there is partnership working, and to ensure that the Social Work offer is provided to people with mental health needs, and to help people become in terms of prevention. Her other role is also that trust wide responsibility for safeguarding so the heads of adult and children’s safeguarding reports to her including the areas for domestic violence and abuse, prevention agenda. She also has a trust wide responsibility for the mental health laws that include areas such as mental health capacity, Human Rights Act, etc. In terms of just tying back to the social work, leadership role, apart from working closely with a board, she also has the responsibility to ensure that our social work workforce, social workers that’s directly employed by the trust, are also professionally well supported.

Carla spoke in terms of support to carers and families, where she thought, were important just to highlight again, on a slide where the work at that the trust is doing overall, in terms of manpower strategy, and that’s very much also founded on the triangle of care, where SL&M sees the carer very much as a partner in the care that SL&M provide. There’s a lot of information that SL&M has developed as a trust and under the leadership of Gabriel Richards, who leads strategically on the carer’s agenda. SL&M has got a carer’s charter that is highlighted. SL&M also provides information in their families and carers Handbook, and also information leaflets, posters shown in the blog regarding carers rights under the care rights, writing, carers assessment. SL&M also has information about confidentiality and sharing of information.

SL&M also provide information to nearest relative where we have useful nearest relative leaflets as well on what is provided to carers. One of SL&Ms duties is to try To ensure that ‘cared for’s relatives are informed and consulted with, particularly when there was a Mental Health Act assessment under Section two of the mental health act. The approved mental health professional has a duty to inform the nearest relative under Section three, where the relative has the power to object to someone being detained to a loved one being detained under the Mental Health Act. The nearest relative can also ask for an IMHA, which is an independent mental health advocate to see the patient and the nearest relative can request a mental health assessment, which she thinks sometimes nearest relatives not everyone is aware of that in certain circumstances where it’s been really difficult or challenging to access for whatever reason. So whilst the local authority is to consider the assessment under the Mental Health Act, or the rights and powers of a nearest relative. The nearest relative can write to the associate hospital managers to request for discharge. Sometimes that’s out here too, but in circumstances where they’re responsible clinician disagrees from a clinical point of view, they can roll that request up to the hospital managers who will review that decision as well.

An nearest relative can also appeal to mental health health tribunal, and they’ll set up some circumstances where nearest relative feel that they are not able to take on this role, because it does have a lot of power and responsibility with it. And sometimes some families feel that if someone that’s been identified as a narrows relative that may impact on relationships with their loved one.

This concludes our Lewisham MH carers update for July 2021

Lewisham Mental Health Carers forum June 2021

Welcome to the June update of my Lewisham mental health carers forum. For the month of June my MP Janet Daby who attended to speak to unpaid carers and update us on what Lewisham has been doing for unpaid carers since carers week 2021.

Also in attendance was Jo Power who is the Liaison Officer for the Parliamentary and Health Service Ombudsman.

Cath Collins – Carer support worker presents on her role.

Before Janet spoke about unpaid carers, I felt it important that Cath Collins had a chance to speak about her role and her passion to support mental health carers. Cath Collins used to work for SL&M as a carers support officer, but is now employed by Lewisham council, but in a similar role.

Cath spoke about what she is employed to do and what she has been doing. Her remit is with the adult community mental health team. So she does not work with CAMHs, the children, adolescent teams, the older adults. She spoke about how we have primary mental health care teams in Lewisham, which is part of a new transformation of services, that should be aligned to GP practices.

Cath also spoke about having community teams where people have a longer period of support who suffer from serious long term mental health conditions. She mentioend we also have specialist teams in between, which are Early intervention services, which is for people in the first episode of psychosis, regardless of what age they are SL&M also have a personality disorder service.

Cath’s remit is to work with the teams to look at several things where one of them is to look at the information that they give to families and carers. These being are they getting the national up to date information? Other things focus on is such info good information about diagnosis? how to care for someone with a specific diagnosis? being involved in discussions around the care? If not, then why not? and how we could work on it?

With advice and information service, Cath reminded that they have got a group tonight, which is a mental health care support group where people can attend and speakers will go through important topics.

Janet Daby section.

I consider it very important MPs and those who lead on social care engage with those who are vulnerable in the community, especially if the group is grassroots and self-led. I am sure there are reasons why representatives would not want to speak to vulnerable groups, but those reasons are very few and far between.

It is also a two way thing, not only is it important for MPs to link with unpaid carers, but also unpaid carers understand the importance of forming relations. Too often I hear from unpaid carers that they are in an urgent situation and wish for counsel, which is fair. However I wonder in the back of my mind if something could have been done before things got out of control. It might be usually up to carers to keep their ears to the ground and find out what is really in store for them, even if they have the unpleasant task of trying to hold health and social care leaders to account.

Janet mentioned that Carers Week, which took place this year from 7 – 13 June, is an important opportunity to recognise, value and support unpaid carers. She felt that the Government must properly fund respite breaks so carers can put their own needs first, and ensure they can continue to provide vital, life-saving care and support. She knows that this is something that both Carers UK and the Association of Directors of Adult Social Services have been calling for.

Janet remains concerned that until there is long-term investment in social care, unpaid carers will continue to be overwhelmed. After a decade of cuts to local government, £8 billion has been lost from adult social care budgets and too many families have been left to cope without the support they need.

The Government first promised to publish its plans to reform social care over four years ago. Despite repeated promises, Ministers have still not brought forward any legislation, new funding, details, or timescales for reform. The recent Queen’s Speech, setting out the legislative agenda for the year ahead, was absent of any detailed plans.

Janet continued speaking to our group about being happy to attend and meet with us even if it was more than once a year. She spoke about her plans and concerns about the SL&M’s Ladywell unit and her plans to raise queries and questions with the chair of SL&M. I asked questions about Lewisham’s focus for carers and how those who lead on social care could engage with our group where Janet mentioned a few people. As a group we have been struggling to get engagement from those who lead on social care, but in other areas of London it seems easier to get that engagement, other carers have mentioned it is not worth the hassle, but I feel it is important to get such engagement even if they respond with bad news. Nothing is worse than being ignored and left to try and support others going through isolation, exhausting and feeling they are not being heard.

Jo Power Ombudsman presentation

Jo spoke about The Parliamentary and Health Service Ombudsman and the focus was on Who they are, what they do. Jo spoke about how the Ombudsman works and makes it’s decisions. Basically the PHSO was set up by Parliament to provide an independent and free complaint handling service. It is the final stage for complaints about the NHS in England.

The PHSO staff considers on the following.
– can they investigate?
– should they investigate?
Other factors include
Suitable complainant
Time limit
Legal remedy
Another organisation that could be involved.

Jo also spoke about how the PHSO gave’s evidence in the form of.
– Hearing from both sides
– opportunity to tell the PHSO what lay behind clinical decision making
– clinical records
– CCTV, phone records
– witness statements/visits/interviews

There was also an explanation about how the PHSO investigate complaints. As they look to see if what happened was in keeping with relevant regulations, standards, policies and guidance or established good practice. If it wasn’t, the PHSO look to see how significant the shortfall is and the impact that it has had and, if it has caused hardship or injustice, if that has that already been remedied by the organisation.

The PHSO also work with the following organisations.

Stats and figures were given for the carers group to digest from 2018/19

112,262 enquiries received
82,998 enquiries resolved through advice or re-direction

28,841 complaints handled by casework teams
24,183 complaints were not ready for us
5,658 decisions were made including:
746 investigations upheld
871 investigations not upheld
3,597 assessment decisions
444 resolutions

The PHSO also updated us on what they have been doing recently. As from last year they ran a public consultation to get people’s views on the draft NHS Complaint Standards. The consultation generated a lot of interest and feedback. On 24 March 2021 they published a report that set out the responses they received and explained what they did and the changes they made in response to the feedback.

There was a long Q&A session regarding the PHSO’s work and how the focus can be influenced by unpaid carers. This was the short update for my Lewisham’s mental health carers forum for June.

Lewisham Mental Health Carers forum March 2021

Welcome to a brief update of our March mental health carers forum for the borough of Lewisham. The carer’s forum is chaired by unpaid carer Matthew Mckenzie who runs many engagement and peer groups in South London aimed at families and carers who care for someone suffering mental illness or mental distress.

The speakers for the month of March 2021 were

British Institute of human rights.
Wendy Dewhirst SLaM new Community manager for Lewisham.

BRITISH INSTITUTE OF HUMAN RIGHTS PRESENTS.

It is clear that unpaid carers have rights, otherwise we would not have the ‘Care Act 2014’, but what is not clear is how unpaid carer rights are linked into human rights. This is why I am linking carers to understand more about human rights.

Continue reading

Lewisham Mental Health Carers forum February 2021

Here is the update for the February Lewisham Mental Health Carer forum. The forum is aimed at those who care for someone with a mental illness. Most who attend are unpaid family carers. For this forum we were joined by the CQC inspector for GP surguries and Professor Luke Clements from Leeds University who is an expert on carer’s rights.

As for the members of the forum, carer members were from South West London, Lewisham and Greenwich where I often host other carer forums or support groups. We were even joined by West London NHS trust staff who were interested in how a carer led forum runs, plus also SLaM early intevention staff.

Continue reading

Lewisham Mental Health Carers forum January 2021

Welcome to the first update of the first carer forum for January. These carer forums are aimed at those caring for someone with mental illness. The forums provided engagement from mental health services to educate and involve carers regarding services provided.

Carers can also network together and slowly build up empowerment. For the month of January we had Lewisham health commissioner Natalie Sutherland talk about the following.

  • Her role at the Clinical Commissioning Group
  • Why the CCGs merged
  • Their focus on mental health
  • Pressures on the health system due to corona virus
  • Initiatives for families and carers.

Also in attendance were carer members from Lewisham and some from other areas interested in mental health services. We also had a few researchers from universities wanted to speak to carers about their research.

Continue reading

Lewisham Mental Health Carers forum October 2020

Welcome to a brief update on the October Mental Health carers forum for Lewisham. I have been so busy of late, that I did not have much time to do any writing. For the carers forum, the guest presenters were Carol Burtt who is a Consultant Clinical Psychologist for Lewisham and she spoke more about IAPTs in Lewisham.

We also had Susan George from the CQC who inspects GP services in Lewisham engaging and updating carer members of the forum.

Going back to Carol, she spoke about how the service IAPTs provides are primary care where they essentially provide help for people with mild to moderate psychological difficulties such as mild to moderate depression and or anxiety. Anxiety might include panic attacks, or a state of worry. Carol talked the group through such symptoms like generalized anxiety disorder, social anxiety, health anxiety, some OCD, obsessive compulsive disorder, some relationship difficulties that might be leading to depression or anxiety.

Carol spoke about how mental health can cause some relationship difficulties that might be leading to depression or anxiety. So in fact, it might be more likely to be something that carers might experience themselves rather than the people that they are caring for. Carol then talked about how busy the service is, being that they had 880 referrals last month and they processed about 600 people who were seen last month.

For people to access IAPTs, you can get a telephone assessment within a few days, and this is what IAPTs is aiming for at the moment so that we can have a rapid response to people’s referrals. This is so people can get to speak to a clinician within a week, and a chance to talk about explaining the difficulties. People can get referred and then get directed to the most appropriate treatment.

Certainly last year, SLaM IAPTs did increase a lot of digital input so that people can actually have some treatments via online programs, which SLaM call computerized CBT, which could be an initial treatment. Carers can access that very quickly. So people can start such treatments within a week of having had your first telephone assessment with somebody. So that’s the benefit of that. Carol mentioned that IAPTs online is obviously not for everybody, some of the us know, that some people will want to have a direct face to face contact at the moment, obviously, with the COVID situation where SLaM working remotely.

Carol then explained more about the service as in how people are allocated to a psychological well being practitioner, SLaM have about 20 of those clinicians which Carol manages herself. These clinicians have had a training in a low intensity CBT cognitive behavioral therapy, so they’re trying to provide what we call Guided Self Help.

Carol then gave us an example of how people would have access to these different programs. One would be for depression. One would be for anxiety, one for social anxiety. The person would have some tasks and some information that they would have to deal with each week. Then each week, it finishes with checking in with person, either online or by telephone to see how you’re getting on.

Still, if people felt that their mental health was a bit more complicated, and SLaM felt that you need it, then any input with a psychologist or a cognitive behavioral therapist, or a counselor would be a three to four months, wait a moment.

Carol also explained that before the COVID situation, they were providing face to face workshops in groups where people actually attended their clinics, but since the pandemic has affected things, they are now looking at more online groups and workshops. Carol reminded us about our BAME forum where her colleague, Elaine presented and how she is leading on the development of some workshops, particularly for local communities in Lewisham.

QUESTIONS FROM THE CARER MEMBERS

A number of questions were asked of Carol from our members. One of the group members was interested in the following question on if the IAPTs service helps those with addictions when people have got the problems and they’re addicted smoking, drinking alcohol, or even taking illegal drugs?

Carol responded that they do is make an assessment as to whether addiction is a primary problem, or even if addiction is the biggest problem or there’s an element of depression and anxiety. For example, somebody who’s got a very serious drinking problem or significantly problem, then they would advise them to go to a specialist addiction service. Carol also repeated that they are trying to look at different ways in which people can access this help earlier, as soon as possible. They are looking at providing these online interventions, and online workshops as soon as possible so that people get some help. Very quickly, before I can say, for such problems develop further.

Another carer queried the struggles they have when the cared for has trouble accessing the service, especially from a mental health trust. The carer does not want to intervene, but notices how difficult it is for the caree to get lost in trying to access IAPT services. Carol mentioned that unfortunately, it’s the way things are organized. And they have a secondary care psychology that is very separate from primary care. So they don’t provide a service for people who’ve been admitted to secondary care psychology, which is a separate.

Another carer made a statement rather than a question and pointed out that she was referred to IAPTs on a series of six well-being workshops. She felt that the CBT there, she didn’t find that useful because it was too general.

CQC PRESENTS UPDATES

Susan from the CQC was listening closely to what carer members questioned or queried. Susan felt that its really important for representatives from CQC to hear our stories, and she really appreciates everything that was mentioned today. Susan continued that it’s also important because she is an inspector of GP Practices and part of her job is to ask providers what they’re doing in terms of providing care and support for carers. So it’s vitally important for her to hear carer members own experiences.

Susan mentioned that there was not too much time, but she would do just a quick summary of things she has been involved with, and what the CQC are doing at the moment. The CQC are looking around at communication with patients and patient populations, particularly with carers. The CQC are looking at a number of scenes of regarding the pandemic and how services have communicated with people.

Since the GP practices has started to shut their doors, the CQC are interested on what the GPs do to open up again, what are the GPs doing to tell people that they are open again, that they’re available for routine appointments? How are they telling people about the services that are available?

The CQC are also looking at sorts of communications, the CQC are looking at how GPS are maintaining equality of access or equity of access for people. There has been a huge change digitally in terms of the type of appointments and consultations that people will have. Not everybody is fluent in English or has access to digital means of equipment or resources.

Susan pointed out that some people who may find that trying to navigate their way through this new online world of appointments is baffling and terrifying. So the CQC are also looking at developing, how they talk to the GPs during inspections. The CQC are interested in what the GPs are doing to make sure that they’re communicating clearly with patient’s about the changes to appointments. Explaining to patients about the difference on treating for an emergency appointment, an urgent appointment, a routine appointment. There is a lot of assumptions that everybody knows all these phrases mean.

Susan updated us that the CQC have just published the “State of care 2019” for 2020. The report is available on the website, however Susan kindly sent us the link in the online zoom session.

The report is especially important because it pulls together some of the themes that the CQC have been looking at during COVID-19 and also pre COVID. The CQC are looking at some of the gaps in access to good quality care, especially mental health care. The CQC are also looking at the themes around system health inequalities around support and care for our better communities.

The CQC are also looking at communication and are interested in conflicting messages or conflicting nasty messages and guidance. It’s not always clear for patients and the CQC are interested in how GPs are engaging with their BAME communities.

Other things Susan pointed out was that the CQC have been working on questions about safe care and treatment and about the support for people living with mental health illness. The CQC are also asking providers specifically about how to be monitoring carers health and safety during the pandemic, have they been maintaining their registered unpaid carers and so what steps have the GPs taken to enhance the identification and management of the mental health issues of people living with mental health that includes people with dementia.

There were a lot of questions from the forum regarding the state of carer registers, some members are aware of the pressures GPs are under especially with new contracts, but others are keen to see where carers are being referred to and if social perscribers are doing their role.

HEALTHWATCH LEWISHAM ENGAGES WITH CARER MEMBERS

Healthwatch were there to listen to carer members regarding health services.

Healthwatch Lewisham are an independent charity. They are the patient champion for people who use health and social care services and so they listen to people on what’s going well on health services, what’s not going well.

Healthwatch Lewisham collect that feedback from patients and then at the end of every quarter they analyze and report back. Those reports are presented to sort of people in the borough of Lewisham that have the power to make change happen to like commissioners.

Healthwatch Lewisham also do project work and one of their recent projects was looking at the impact of the COVID-19 on Lewisham residents. That report has now been published. Healthwatch also has an advocacy service. So if anybody has complained about NHS service that they’ve used, and they can go through their advocacy service. So far healthwatch Lewisham have three advocates, and they basically help people through navigate the health system.

The reason Healthwatch Lewisham were at the forum was because they wanted to gather some feedback from people’s experiences with health and social care services. They were interested in feedback regarding GPs, hospitals, pharmacies, dentists, opticians, mental health services, Community Services, basically anything that carers and the person they care for has accessed.

Healthwatch Lewisham were kind enough to recognize that it’s a group environment and sometimes people don’t feel comfortable sharing their experiences. So even after the forum, members could feedback via the healthwatch email or site where they sent the link.

CARERS FEEDBACK TO HEALTHWATCH LEWISHAM.

Many of the group members fedback experiences on the following.

1) Lewisham Hospital
2) GP appointments
3) Positive aspects of using GPs
4) Dealing with receptionists
5) Dental appointments

This was the update for October at our Lewisham Mental Health carers forum.

Lewisham Mental Health Carers forum September 2020

Welcome to September’s 2020 update of the Lewisham Mental Health carer forum. The forum is run via Zoom to protect attendees from the risk of Corona Virus. The forum usually runs from Carers Lewisham centre, but is now online. The carer forum gives carers in the borough a chance to engage with Mental Health and Local authority services. It is a form of empowerment for carers and a way to gain insight and knowledge.

The forum also gives carers a chance to work together with health providers as co-production often gets raised. For the month of September we had a special “Carer Peer support” event, where many other carers were invited from my other carer groups, especially some from Greenwich who were wondering what does it mean when a mental health trusts champions peer support. Carer peer support has a different focus though, as it is aimed at families and carers. It also must be mentioned that peer support does not have to be a service that comes from the mental health trust, but carers themselves can also practice it.

We were joined by Peer speciallist and carer Donald robertson from sussex NHS partnership over in Brighton, we were also joined by Shelagh Musgrave from Birmingham and Soulihil NHS trust. Both were at the forum to educate and explain the importance of carer peer support at NHS trusts and services. We were also joined by Rachel Ellis who is South London & Maudsley NHS deputy head of inclusion and lead for peer work.

As usual the forum was supported by SLaM Jane Lyons who is the Croydon & Lewisham Involvement lead, however our CQC member could not make the forum today and has requested an update. Some of the things mentioned by the other NHS trusts peer leads should be of an interest to NHS England as there were views regarding peer support pilots across 3 NHS sites.

Sussex Partnership NHS Foundation Trust Carer peer support

Donald Robertson spoke at length of his role over at Sussex MH NHS Trust. He started off as a carer who cared for his wife for many years before slowly becoming more involved as peer specialist at his mental health trust. He now works within the NHS. So he feels like he can inhabit all three corners of the triangle of care in different ways. Due to being a carer, going through difficult times and being a health professional. Donald was trained as a social worker based on his own lived experience.

Donald mentioned peer support is about using his lived experience as a resource. It’s about changing things and how he wouldn’t go back to some of the times his been through, he wouldn’t even give his worst enemy back to some of those times he had, but his glad it that happened, because it made him a stronger person for today. Don pointed out peer working is a bit special. and it’s not just about having the the lived experience, it’s about how you use it. Peer support is how you support somebody with without having to be competing to see who has got the worse symptoms.

HOW PEER SUPPORT WORKS

Donald usually meets or chats to carers reffered to the trusts peer support via video link or phone and asks them “What would be helpful for you” “We can talk regularly as one to one around 15 minutes at a time. He would then confirm that the peer support can be flexible for carers to engage with him or donald could even be in contact with carers by text.

Donald spoke about the carers groups. One of the main groups actually existed before the COVID situation. Don mentioned that he sort od reshaped the carers group and things started settling in their place. The peer group has good numbers where 10 to 16 carers attend. So the peer group is really became very successful. Don asked that people to come to that carers peer group first or to call because he understands that when a carer is struggling? especially if its isolation or if they feel like they are the only one in such situation. Then being in the group where people just get it and understand where you’re coming from almost without having to say anything.

Don was glad to see veteran carers take the lead and set up a workshop to showcase the aim of peer support and the peer support group. There were challenges and struggles as other means to connect were difficult, especially connecting through social media or trying to work out how carers connected through whatsapp, plus NHS England set up something that is aimed to protect people’s anonymity which is very important, but also reduces the chance for carers to connect with each other.

It was also reported that when COVID-19 arrived around spring time, it shook peer support up a bit, because Don was not fully comfortable providing peer support online. This was especially when someone is telling you a difficult and emotional story only for the connection to drop, plus it misses several aspects of peer support including reading body language and giving others the chance to speak. Donald wanted to make the most of his time as being part of the NHS team when it comes to providing carer peer support, he did not want to duplicate what was provided there already and wanted to focus on giving more options for carers.

DESCRIPTION OF CARER PEER PATHWAY

I then took the oppertunity to ask Donald Robertson about his NHS Trusts flow chat regarding carer peer support. This was one way carers can examine how a mental health trust can provide support without having to read into any difficult jargon. It also gives an idea that the NHS trust is interested in carers and has a pathway on carers.

Donald told the forum that the chart is focused on carers supporting people having a first episode of psychosis, it’s about the evidence. So if you put some more intensive support in for some carers, that will mean that they will not end up in a long term service user. So the client service user is taken on and our standard assessment period is about six weeks.

There’s a lot of getting to know somebody before it’s completely clear, whether it is psychosis, or if there’s other factors, and Don actually gets involved earlier to help signpost to other services. Still, the lead practitioner identifies the carers and if the carer does not want support so close to the NHS Team then there is always independant carer support at Brighton’s carers hub. The mental health support team will always endeavor to keep the carer involved as much as they can.

You can find out more about Sussex NHS Partnership below.

https://www.sussexpartnership.nhs.uk/

QUESTIONS FROM THE FORUM

I then opened up the forum for carer members to ask questions regarding carer peer support at Sussex mental health NHS partnership.

A question on Older adults was of interest to a carer member. He was interested on what information did Donald give out the to older adult carers who are caring for someone with dementia. The carer was wondering if the pathways were more of a one shoe fits all policy. The carer member was also interested in sigma from the BAME community over in Brighton and wondered if Donald had any connection to that group.

Donald responded that it’s important to avoid the one size fits all policy. He engages with carers more as a person centered approach. So Donald is asking what the person in front of me needs. In the Services Donald works in it is all about people who have experience psychosis for the first time, traditionally that’s dominated by people in their late teens or 20s. So there’s a lot of work to be done about helping carers to acknowledge that they are carers. Donald feels his stereotype of a carer is somebody who is helping someone getting dressed, and maybe spoon feeds them, but he himself has never done that. His caring was much more about emotional support. And, rather than kind of fairly practical stuff even though they’re both important, but they are quite different.

I mentioned to the carer that since Sussex NHS partnership was a large trust that maybe Donald was not involved in the dementia service or BAME engagement, but there can always be a forum where we examine how other trusts engage with the BAME community.

Another carer member wanted to make a statement rather than a question, she felt so much resonates with her on what Donald spoke about. She pointed out 3 things, the First point was on how Donald mentioned the typical age group, that someone gets psychosis and some of the other illnesses or some of the other mental health illnesses. Her son fell ill when he was in his late teens. She still is not sure that her son’s illness has been fully identified and what caused it. Her Second statement was how it affected her so much that she couldn’t move on with her life, it was very difficult for her to move on.

Her Third and last statement was on how she was assisting my brother and even though her mother had 10 of us, she ended having to be the one taking on the caring for her brother, while most of the other members of the family want to know what’s going on with him they are not offering to help.

Donald responded and agreed that when one of the carers who was in that situation he remembered them telling him to “help them is help the people around me to not come through me” Donald remembered that he did a work with about four or five different people from that family. He felt it’s quite natural, because people are scared, it’s easier to get it second hand in some ways, because the main carer is that kind of buffer.

Another carer raised the point about my recently released book and if the CCG would take the oppertunity to help promote the book due to my high profile of raising carer awareness. A recent update is SLaM has purchased my book to the library under their carer’s section, although the carer mentioned the book should be standard reading on training staff about carer identity.

Birmingham and Soulihil NHS Trust carer peer support

The forum was given a chance to hear from another mental health trust on carer peer support. We heard from Shelagh Musgrave who is the Family Carer Peer Support Worker on the Women’s Secure Blended Service Team.

She started in her role nine months ago, but she was honest that there are challenges as she felt there are still NHS collegues who do not embrace family/carer involvement in getting peer support. She felt there can be a lack of communication to the carer and it needs to happen more often. This is particularly a problem when confidentiality continues to block carer involvement and then causes families to back out of recieving any other means of support.

She mentioned it can also be quite challenging to encourage colleagues at the NHS to understand that actually families and carers have shared information with them so then it’s no longer confidential. So if they have shared something with us and I tried to speak with colleagues about it, I surely can talk about it to them because it isn’t confidential anymore. Yet, this is not often the case as if something keeps blocking that triangle of care regarding families and carers.

Another issue with confidentiality is Shelagh’s role is actually with a charity rather than embedded with the NHS trust and even then confidentiality can sometimes block her off from getting involved or finding out what is going on. For example because she is peer support worker she might have picked up on a self harm incident and would need to update the family on what could be happening. She felt it’s really hard to get information as a carer and they just have to sit with it. It is like the carer is left wondering what’s happened this time.

The reality is that the carer be informed of these incidents, because it’s relevant to the person that cares for them, but unfortunately the culture of care is that carer may get shut out, which leads to impact or the trauma that might be taking place with the family and carer is left, as it always has been.

Shelagh mentioned that the NHS Trust actually have a family/carer pathway modeled within the trust, although it’s in the very early days. Still there is a problem as there is a seperate service user pathway and that process has created challenges as well, because it has led to some of her works going on hold.

Still there has been good engagement where it has made a great difference for families. Shelagh mentions she goes on to contact carers and get feedback from them, which is incredibly positive. Shelagh stats that she has a very proactive approach to being in touch with families and carers and she essentially makes my initial contact with them introduce herself explaining what her role is.

Shelagh does ask carers, what would be helpful for them. But she also makes them aware that she will be touching base with them regularly. So her approach tends to be, and she will call and if you don’t want to speak to me, that’s absolutely fine. I will check in on a monthly basis and I wouldn’t take offense, if you tell me you don’t want to hear back from me going forwards. Oddly enough no carer has actually told her that they do not want to hear from her.

Still Shelagh does not speak to every carer that’s on the books and she does make contact with as many of them as she can, but is not permitted to contact some because there are some for clinical reasons that I’ve been asked not to be in touch with, which she felt was a shame, but she can’t argue with that because she does agree with that everybody should be entitled to access peer support, if they wish and she do think it should be your decision, I do think it should be a clinical decision.

So she has ongoing contact, which ranges from anything from every fortnight to every two months. What she also do is feed concerns that the family have back into the a clinician. So for example, we had a young woman who was being discharged. Her family had attended the discharge CTA section 117 meeting, but actually hadn’t been given any contact details for the community care coordinator or the accommodation manager. So I was able to feed that information in the team to get contact details from the team and was able to get information to that family.

As far as the NHS knows they were aware that she has ongoing contact with families, but what she finds really interesting is a professional at the NHS states to her that our contract has to be meaningful. What does this mean?

Well meaningful to who and when you drill down, meaningful contact seems to be viewed as contact that is going to provide information that’s relevant to the service user. So if Shelagh’s contact with the family is not going to provide the clinician with information that is useful and valuable to the service users care then there is little point in meeting the family, but Shelegh is against this culture, because in her role she is there to support the families and carers and I, if they happen to share something about services or have a team.

Shelagh does tell NHS professionals she works with right in the beginning, that she works for a charity in partnership with the NHS and has an honorary contract with the NHS. However she is not sure if it’s because she works in the charity or because the NHS hears the word peer that NHS professionals might stand back.

Shelegh feels the feedback she gets is the value of talking with somebody who has lived experience is “that you just get it” and the carer does not have to explain what things are like to me. Shelagh has lived through it. She feels because carers might be limited in communication if they are talking to an NHS professional, nurse or psychiatrist. There’s often a sense of well, what do you know? What do you know, you haven’t experienced it from my carer’s side? So how can you stand there and say this to me. Whereas carers sense if she says something to do them or listening to them, and they will often say to her but you do understand this, don’t you?

It’s like a shortcut has created in connecting with carers and families where you don’t have to explain to people, what it’s like to deal with your child who self harms and you don’t have to hide from people, or you don’t have to explain to people how heart wrenching it is to hear when your child says to you ” I don’t want to live anymore why dont you just let you die?”

You can find out more about Birmingham & Soulihil NHS Trust below.

https://www.bsmhft.nhs.uk/

Family Carer Peer Support Worker view on the future of carer peer support

Shelagh felt that there is a massive need for carer peer support workers. She is aware that carer peer support research is very limited. However, she thinks we have to look at is that the research into peer support itself shows its value. So why do we have to differentiate whether or not peer support is carer or service user we’re looking at here towards the value is of lived experience. Doesn’t matter what your lived experiences?

Personally, she don’t believe it does. And But clearly, there are people who work by the research. That being NICE (National Institute in Care & Excellence) works by the research, Shelagh mentioned that she is very upset wit NICE because of this and she think that’s really sad peer research is not extending to families and carers.

Shelegh feels when carer peer support is established and its on the ground then we can see the difference that it makes, she feels that does not matter, what the background of the lived experiences is and wonders is she the only person in the NHS trust, which has 4 and half thousand staff?

There is a definite barrier of some sort, by changing the way families and carers engaged. Shelagh thinks we need to be doing it. She thinks we need a top down and bottom up approach, which has to come together. Because if you don’t have the support from the senior management’s, you’re not going to have this sense of drive.

Shelagh hopes that over time, she hopes that more and more people will change and understand that families and carers are not just there to provide background information on the service user. Carers are the equal partners in the NHS and NHS professionals also have a responsibility to families and carers. Because if they don’t support the families and carers with somebody is in the inpatient setting and they just discharge them into their community that hasn’t been upskilled or that hasn’t been supported, then it’s good to keep that revolving door going on for decades.

South London & Maudsley Peer worker presents

Rachel who is SLaM’s lead for peer working thanked Don and Shelia for their experience and is eager to see what results in regards to NHS England’s pilot peer project. Rachel is interested in what worked and what didn’t work. She was also thinking very much about what was the feeling or thinking about peer support is it needs to be co produced. Rachel felt that we can’t just take the model from Birmingham or NHS England and then drop it down in South London and hope that it works.

What SLaM needs to look at is that we need to learn from what the carers want to help them relate and be involved and also engaging with the BAME community. We also want to make sure that we have something that we know works from the outset and avoid that one size fits policy, we need to be creative, and we hope to be working alongside our carers to make sure that we get it right.

Rachel feels the big questions and the elephant in the room is about money/resources and how state to the CCG or other people to make sure that kind of professionalized peer support is seen as important and something that they’re willing to fund that and I feel that’s where the carers forums like this really come into its own and making a guideline proposal around what you’d want from care with peer support.

Rachel mentioned it would be really useful for members to write something formal to the Commissioners about your needs and what you think professionalised peer support would look like. Rachel added what carers would think the benefits are to the CCG especially relating to the triangle of care.

So it’s not just around providing peer support and support for carers, but also making sure that that’s all linked in so we get a really good support for when someone’s discharged or someone’s community services. Its not only important support for carers, but it’s also seen as linking up care for the people who use SLaM’s services.

This concludes the September update for the Lewisham Mental Health carer forum.