Author Archives: mmckenz11

About mmckenz11

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

A Look back at 2019

10177241_747738765268892_5890142387668348507_nThanks for dropping by. I am in the midst of compiling my new podcast on the experiences of carers, but in the meantime I thought to do a quick blog on looking back at what I have been up to in 2019.

As usual I have been continuing to run four carer forums each month for the past year. We have had a lot of support from the community and I can only hope it continues in 2020, because the groups will increase to another 4 and an extra borough.

However from each of the 4 carer engagement forums here is the list of those who engaged with carers

Lewisham MH carers forum (2019 speakers)

  • SLaM Hoarding Service
  • Roslyn Byfield is a trained Counseller and therapist,
  • Kathryn Hill (Director of England for Carers Trust)
  • SLaM Engagement lead for Lewisham and Croydon
  • SLaM Patient Advice Liason Service
  • Lewisham Healthwatch
  • Lewisham CCG
  • Ruth Morgan – Clinical Psychologist
  • Aaron Brewer – SLaM Quality Improvement
  • Cllr James Rathborne – Lewisham Mental Health Champion
  • SLaM Head of Nursing

Lambeth MH Carers forum (2019 speakers)

  • Lambeth Healthwatch
  • Eva Klamerus on CoPE online resource for carers
  • Lead for Lambeth Hospital
  • Helen Hayes MP for Dulwich & West Norwood
  • Rebecca Martland researcher from the Institute of Psychiatry, Psychology and Neuroscience
  • Robert Stebbings the Policy and Communications Officer from Adfam
  • Older Adults and Dementia Operations Directorate

Southwark MH carers forum (2019 speakers)

  • Eva Klamerus on CoPE online resource for carers
  • Southwark Healthwatch
  • Kings College Hospital Carers Lead
  • NHS Serious Incident investigator
  • Nicola Gunn Solicitors
  • Southwark CCG on their carers strategy
  • Southwark Council
  • Rebecca Martland researcher from the Institute of Psychiatry, Psychology and Neuroscience

Lewisham BAME MH carers forum (2019 speakers)

  • Lewisham Police MH engagement lead
  • Eva Klamerus on CoPE online resource for carers
  • Lewisham CCG – queries on Lewisham carers strategy
  • Lewisham Council
  • SLaM PALs on SLaM Carers strategy
  • Table Talk on Older Adult community support
  • SLaM pharmacist
  • South Lewisham GP Practice PPG chair
  • SLaM Equality Lead
  • Errol Chambers SLaM Inpatient social worker
  • Clinical Team Leader for Lewisham Community Services

I would like to thank those who took their time out from work to engage with carers and carer representatives in those boroughs.  Special thanks to fellow carers also managing to attend.

Just a quick note that there have been quite a few more attendees particular for Lambeth borough, but I had not managed to always blog those meetings in time.

Other things I have been busy doing in 2019.

Below are a list of events and activities I have been up to in 2019.  The list is not in-depth because there are a lot of things I have missed out, but there is a link below each title which you can click on to read more about different events.

Lewisham Stakeholder event

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Near the end of the year, I was happy to set up a workshop about carers at the Lewisham CCG stakeholder event. It took a bit of work, but many carers from Carers Lewisham supported each other and we all felt the workshop empowered us all. The Lewisham Mental Health Stakeholder event went very well and was attended by many stakeholders, partners and organisations also running their workshops.

Lewisham MH Stakeholder event Link

ADASS Carer celebration festival 2019

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The first London Carers festival took place over in the London Borough of Tower Hamlets. The event was planned by the Directors of Adult Social Services and other partners. The carers festival was very well planned with many community activites throughout the day. As we all know carers do much for almost next to nothing, so I was proud to attend and observe the festival. I hope the 2020 carers festival will go well and I am wondering what London borough will run it.

ADASS Carer celebration festival 2019 link

HSJ Award Ceremony 2019

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The Health Service Journal awards was a long time in the making, but I am not surprised because the awards cover the whole of the NHS. I was delighted to be one of the judges on picking which part of the UKs System Led Support for Carers and how those systems would incorporate, identify and empower carers. All applicants had excellent case studies, but can be only one winner which was West Yorkshire and Harrogate Health and Care Partnership, although Manchester Healthcare partnership was highly reccomended.

HSJ Award Ceremony 2019 Link

Carers UK annual conference 2019

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Carers UK (I often mention them) also had their annual conference on developments around the country for carers. I was delighted to be given a chance to speak at the conference in regards to carers empowerment, which I feel is a much needed thing for carers. Carers UK gave me that extra voice for that day and will continue to give carers that needed voice.

Carers UK annual conference 2019 Link

St Andrews Black History Month event

I was not able to blog the event, but I was happy to speak about the “Importance of BAME NHS Staff and the relation to BAME carers in the community”. The event took place of at St Andrews healthcare site. The site was massive and I felt like I walked 3 parks to get to their head quarters. The turnout was very good and the event was planned well. I am awaiting what the outcome is for 2020.

Service User Advocacy Exhibition

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Bethlem’s Museum of the mind has recently put up an exhibition celebrating experiences and voices from the service user and carer community. Part of the exhibition showed my views on why carers should be involved in the NHS and helping to shape mental health services. After all, I have been involved at SLaM for close to 5 years or more, plus I am involved at other mental health trusts and probably counting. The Exhibition opening went smoothly and I have visited the exhibition several times.

Service User Advocacy Exhibition Link

Royal College of Nursing involvement group

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The Royal College of Nursing has taken up the Triangle of Care a policy that aims to connect Health professional, Patient and Carer. The majority of input does come from MH carers as the culture of the health service centers around the patient, this can go double for the mental health system, so a policy from a carers perspective is a welcome result. Due to the RCN taking on the Triangle of Care, other avenues have opened up and one of them is the RCN’s involvement group, which I am a member of.

Royal College of Nursing involvement group Link

Reform of the Mental Health Act Debate

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The reform of the Mental Health Act 1983 has been a long time coming and it was with pleasure to attend the debate of the reform of the MH act over at parliament.  The speaker who led the debate was Neil Coyle MP for Bermondsey and Old Southwark (also a carer) . I hope MPs to engage with carers regarding the Mental Health Act as many carers worry the reform act still ignores their concerns.

Reform of the Mental Health Act Debate Link

National MH Nurses director forum at Warwick University

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The National Mental Health Nurses director forum (sorry its quite a long title) is a major event in the stakes of Mental Health Trusts. I was happy to speak at the event and got a chance to meet England’s most senior Nurse Ruth May.

The facilities at Warwick University were excellent and I think I was very spoilt. I spoke about the importance of mental health carers and the influence families and carers can bring to the NHS. For 2020 it will be a very important year for NHS England especially with the promises government will bring to the table and the World Health Organisation’s Year of the Nurse and Midwife……watch this space.

National MH Nurses director forum at Warwick University Link

Trauma Matters event

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I have very close links to the WeCoproduce CiC and have known them for a very long time. It is one of the many Patient and carer forums that has similar aspects to the forums I run.

I have known Jane McGrath for many years and she always amazes me with the sheer dedication and organisation of running national events. Due to the terrible events at Glenfield Tower, many people were traumatised from the incident and it was only a matter of time before West London community asked what an earth is Trauma. I attended part of the Trauma Matters event and you can see my blog about it below.

Trauma Matters event Link

SLaM Annual Trust Psychology and Psychotherapy event

Psychology and Psychotherapy mean a lot to me and as far as I know SLaM runs an annual Trust Psychology and Psychotherapy event. I was happy to speak about the importance of Psychology and Psychotherapy at the event along with a patient I have known for a very long time.

SLaM Annual Trust Psychology and Psychotherapy event Link

Triangle of Care regional meetings (Kent & Medway / SWLSG )

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NHS Mental Health trusts involved in the Triangle of Care policy often meet and discuss regional developments. Since I am on the steering group of the Triangle of Care policy, I feel it is so important to attend such meetings to hear updates on how many of the mental health trusts are working towards the triangle of care and engaging with Carers.

One of the regional events impressed me so much that I blogged about it, this meeting was chaired by Kent & Medway Trust.

Central and North West London NHS Foundation Trust host the next meeting, so I am looking forward to how things turn out.

Triangle of Care regional meetings Link

Conclusion

As you can see this has been a busy year for me and I have only mentioned half of what I have been up to as a carer.  Year 2020 looks to be an event bigger year for carer involvement and empowerment and I hope carer engagement to the forums I run continue, because without carers becoming empowered to query how services are, then the family and carer voice goes missing……

Thank you all that believed in me and other unpaid carers.

Latest edition of my MH Newspaper

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Hello all,

There are no Carer forums for December, but in the meantime I am working on the posters for my new carer peer support groups and also working on my Carer audio series.

 

For more information on my Therapeutic Carer Audio series, please check the link below.

Carer audio series

Please also check out the lastest edition of my Mental Health Newspaper.

 

Lewisham BAME MH Carer Forum November 2019

Carers Nov2019Hello again!! Here is the Lewisham BAME Mental Health Carer forum update for November. This is usually the last forum I run out of all the 4 forums per month. The forum is quite unique as the other forums promote mental health carer inclusion and awareness in the other London Boroughs, but this one focuses on Black Asian Minority Ethnic queries. BAME carers and service users suffer a whole different set of issues in regards to mental health services. Most are complex, cultural and historic, but there MUST be some platform for important parties to discuss, network and work on these issues.

Another thing different between this forum and the 3 others is sometimes this forum is a mix of patients and unpaid carers. I often try and leave space for the Service user Rep or chair to update the forum.

Who Attended and spoke

For the November update we had a discussion from Pharmacist Della Bishara in regards to medication and its affects on the patient and how unpaid carers could and should be involved.

We also had a detailed presentation from Rachel Ellis who is from Table Talk, which is a new initiative that aims to help inform senior residents throughout the borough, with the help of volunteers. Table Talk provides leaflets, information and a table in order to engage with the older population.

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We were also joined by a number of unpaid carers and patients, along with a representative from Lewisham Homes, plus Metro’s Representative who provide one-to-one counselling for people who identify as LGBTQ and/or those experiencing issues relating to diversity, equality and identity. We were also joined by Lewisham CCG Engagement Teresa and also Natasha from Greenwich Carers who I approached to set up some carer groups. We were also joined by the rep from Community wellbeing from BLG-Mind who I will also bet setting up a peer support group.

On Medication

We had a very lengthy discussion on medication with Della. Many questions from the attendees she took away to raise at SLaM especially in regards to clinical trials and reporting on side affects. Carers need to be involved because of the patient might not always be able to advocate for their need, especially if dementia takes hold. I raised with Della if there were studies looking at medication effects on BAME groups and if there is a SLaM trust wide forum that engages pharmacist issues.

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It was mentioned that Lewisham Integrated Medicines Optimisation Service (LIMOS) is working in improving medication safety for older people. Basically LIMOS is integrated across the hospital, local care homes and community settings, which means that, if a care home resident is admitted to hospital, or vice versa, there is a seamless approach to managing medication.

As with the psychiatrists bible being the DSM, the pharmacists have an important book, that being the British National Formulary (BNF), the book is not easy to get hold of and is the UKs pharmaceutical reference book that contains a wide spectrum of information and advice on prescribing and pharmacology, along with specific facts and details about many medicines available.

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Della discussed the BNF in detail and how it can help pharmacists, which the forum played close attention to. The forum also discussed the issue of miscommunication of medication between hospitals, covert medication and the issue of control & release medication.

Table Talk presentation

After the discussion with the pharmacist, we moved on to another topic regading older ages people. This was the Table Talk project, which was presented by Rachel Ellis. Rachel has been an outstanding promoter of senior citizen’s causes throughout the borough of Lewisham and has visited a large number different venus in Lewisham this year alone. As mentioned before Table Talk engage with the public on raising awareness of activities, information and support for senior citizens. This is specially important due to the population is ageing as we all are living longer.

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Table Talk work closely with Lewisham council and with Age UK. The Lewisham BAME MH carer forum were shown several leaflets, which can help older people in regards to meter readings, warm homes, fire alarm checks and transport. We discussed how isolated older people can be in the community as Rachel described more information and leaflets.

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Carer led Support Groups

Lastly for the Lewisham BAME MH Carers forum. I discussed the importance of carer-led peer support groups. I will be setting up several carer support groups in a few boroughs. Usually the forums are strategic and engagement focused and there is not enough time to hear carer stories. In fact carer support groups are meant to feed into the carer forums for empowerment purposes, but there were only a few carer support groups in the borough and none carer-led, which means there is not much motivation for carers to connect with each other.

I will be setting a BAME and a general MH carer peer support group with the help of Greenwich carers for that borough and I was so glad Greenwich carers engagement and community officer (Natasha) came along and support me at the Lewisham BAME forum.

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This will be the same for Lewisham as we will work closely with the CCGs. The forum talked about how they felt about the Bromley, Lewisham and Greenwich Mind peer support group event that was held on wednesday the 27th over at York Hall in Beckhenham. We are very glad that they are able to fund that startups of the groups, however I pressed that we do not really need the funding, it will be the passion, drive and connection that can help, not to say funding will not be helpful.

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With Lewisham CCG engagement, the forum has been aware of NHS England’s long term plan and we have made it clear they need to involve patients and carers in that plan. The good news is that the NHS England’s long term plan is beginning to take shape and involve us, but no matter what I do, I want to connect with carers and make them aware that the health system is trying hard to involve them. I am not sure about the social care element, but at least with NHS England, there looks to be some very good and exciting projects coming our way.

BAME Carer experiences Research

As promised I promoted a trainee psychologist’s study into African Caribbean experiences of supporting an individual with MH needs in a forensic setting. She contacted me after reading my blogs to see other researchers were engaging with forums about their own research. The researcher feels there is not enough literature or research papers detailing such experiences and Lewisham CCG will follow this up with the trainee Psychologist studying at the University of East London.

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As usual I thank Kelvin (one of the proactive members) for setting up the talk with the pharmacist.  I also thanks Community wellbeing and BLG Mind for hosting the Lewisham BAME forum and thank Greenwich Carers for the support they have given me and look forward to exciting projects ahead.  I would lastly like to thank Lewisham CCG engagement officer (Teressa) and the other CCGs for engaging with the Carer forums and I am very impressed with the plans they are looking to involve us in.

This concludes the update for November and I will be preparing for the groups with the support of Oxleas and Greenwich carers.

Joint Lambeth & Southwark MH Carers Forum update November 2019

Southwark & Lambeth MH Forum 28-11-19Welcome back to a quick update from another Mental Health Carer forum. This one was a joint forum since due to the election candidates had to cover many areas to campaign and it was harder for them to visit each forum.

On Thursday the 28th of November, we had our Joint Southwark and Lambeth MH carer forum, which was held over at Moasic Clubhouse during the morning. The host for the joint forum was Carers Hub Lambeth who do an amazing amount of work for unpaid carers in the borough of Lambeth.

A bit more about Carers Hub Lambeth. Carers’ Hub Lambeth is an independent local charity based in Brixton, They seek to limit the dilemma’s placed on carers by two key ways. One way is by working with carers directly, and the other by influencing the local services and policies that affect them. Hence this is why we built up the Lambeth MH carers forum, which has been running quite a few years now.

We were also jointed by unpaid carers from Southwark Carers and a bit about them.

Southwark Carers try to make it easier for Carers to have a life outside of caring by 3 key areas, this is by Enabling, empowering and enriching the lives of carers in the London Borough of Southwark. Southwark Carers enabling service is a flexible, individual, personalised service offering support on a one-to-one, plus their empowering service provides carers with information and knowledge of their rights and lastly they help in enriching unpaid carers lives by offering leisure activities or by helping them return to training, education or work.

I was very proud that both groups of unpaid carers came together from both boroughs to be heard on issues affecting carers from the two boroughs.

About the forums

Both Southwark and the Lambeth MH carer forums work the same way as the Lewisham and the Lewisham BAME MH carer forums. The forum is not much of a support group (those are a different and complex animal), they are mean’t to empower unpaid carers who are active in connecting with other carers and the community. The way mental health services are run are complex and also a mystery. These services affect unpaid carers regardless of what anyone thinks. Unpaid carers should be empowered to know what is going on and why. Even then, that is not enough. Unpaid carers should be involved and not be a tickbox or an afterthought.

Where it took place

As mentioned, the joint forum took place at Moasic Clubhouse, which supports people who are living with a mental health condition in the London Borough of Lambeth. Mosaic’s approach is built on the internationally-recognised Clubhouse model , which embeds coproduction between staff and members throughout all activities.

On the day Helen Hayes (candidates for Dulwich & West Norwood in the 2019 general election) visited and engaged with both patients, staff and carer groups to here about the good work they do and listen to burning issues or questions. Helen has been a long promoter of both carer forums and she has visited and engaged with both the Southwark and Lambeth MH carer forums several times already. She works tirelessly to represent the community and often checks up on how things are getting along.

Why it is important to have relations to MPs and candidates

I often felt that carers have a really tough time getting mental health services or the local authority to listen to their issue, which is why when unpaid carers get together, they should have a link to government representatives and a lot more. If there are forces that wish to drown out an unpaid carer concerns, then there is always a risk many would seek to avoid or limit the groups activities. Its not that unpaid carers want to moan or complain, its just they wish to be heard and be counted.

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As a bonus on why it is important for unpaid carers to get a voice in government circles. I have included Carers UK Manifesto on the General Election in the Link below and also Carers Trust’s Think Carer 2019 pledge.

Carers UK Manifesto 2019

Carers Trust 2019 Pledge

Discussions and agenda at the joint carer forum

You will have to forgive me as I completely forgot my notebook, so I did not note anything down.

I had built up the forums to help empower unpaid carers, so I was really happy to see another carer chair such an important meeting and I really hope many will talk about how impressed they were with her.

Helen briefed us on how Labour will strive hard to get the unpaid carer’s voice heard. Labour will strive to work on the Mental Health Act 1983 amendments, but she also mentioned that through years of austerity services had struggled, which in turn lead to difficulty in unpaid carers lives.

I mentioned to Helen my role at the Royal College of Nursing due to the amount of pressures placed on student nurses and nursing in general, we really hope the government will seek to support not just patients, but nurses and unpaid carers. The NHS has taken blow after blow due to lack of foresight and lack of investment, although the intention has been good, intention alone is not enough and too often the social care angle has been kicked down the road.

I have also added RCN’s Safe Staffing Saves Lives link below.

Safe Staffing Saves Lives

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Up for discussion was also the impact of the Care Act 2014 as many unpaid carer was left wondering, what difference has it made since more services were drawn into the local authority and grassroots carer charities have been striped of their power, were funding has been cut and staff at carer centers told to do more. From what I have noticed, it has been a complex web of bureaucracy and deceit where heads and directors of social care are not engaging with groups and make decisions without hearing the stories of those affected by those decisions.

Many unpaid Mental Health carers are wondering what bite does the Care Act 2014 have, when very few are aware what it is meant to do, which probably it is aimed to highlight and protect carers rights.

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There have been situations and stories where the Local Authority gang up with mental health services and push the family or carer out of involvement for the cared for. It is like the carer is not a professional in their own right and the law see’s it that way. Nevermind the peer support, services can and often collude with each other to drown out the struggles the carer or ‘cared for’ may have, which is why we as a group look to the politicians to not only represent us at government, but bring us along in the journey.

If things go wrong or nothing gets settled, then we carers are a patient lot, but we must try and try and try again using different methods.

Lambeth Carers Strategy

Up also for debate was the Lambeth Council’s Carer’s Strategy and how things were forming on the councils responsibility to its unpaid carers.  I have always been a firm promoter that local authorities engage with carers on what they are doing for carers.  It is not enough to assume strategies are too hard or complex for unpaid carers to get involved in.    Even if the carers strategy does not amount to much, at least it raises awareness of unpaid carers and is a way to hold the council to account.  There will be an update on Lambeth’s Carer strategy next year, but I am interested on how other council’s strategies are developing or if they are non-existent.

Lambeth Healthwatch

One method was through Healthwatch, which works to ensure local people’s voices count when it comes to shaping and improving local health and social care services. As with Lewisham Healthwatch, the joint forum was joined by Lambeth Healthwatch due to the proposal of the closure of Lambeth hospital.

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The discussions were well thought out and there was alarm among unpaid carers about the distance and proximity of services moving to Southwark. Even when Lambeth has very high rates of mental illness in the borough we feel there has not been the paper trail of consultations and get the feeling that the Lambeth hospital closure is a done deal. Many still understand that the hospital is not fit for purpose, but cannot understand why Southwark is slowly draining access to services away from Lambeth.

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There was a lot more in the discussion, which unfortunately I cannot remember now, but Lambeth Healthwatch will certainly take this back to the council and CCG. We await updates in the new year. We as a forum continue to seek a relationship with the Healthwatches and other parties including the CCGs, we do not want to make life hard for the decision makers, but we do need to be involved, empowered and heard on specific issues and queries.

No matter what government gets in power, we as unpaid carers will strive to get our voices heard due to the nature of our cause and struggles. It is only fair that what we do for the love of our ‘cared for’ and the ‘community’ that we should not be ignored.

Lewisham MH Carers forum November 2019 update

Mental Health Open ForumWelcome to my quick update of the Lewisham Mental Health Carers forum. This forum runs usually on the last Tuesday of the month and runs from Lewisham’s Carer’s centre. The forum looks at the issues affecting unpaid Mental Health carers in the borough of Lewisham and sometimes further beyond.

The forum does not look into the mental health of unpaid carers, but the situations of families and carers supporting someone with mental health needs. A bit more about the Charity ‘Carers Lewisham’. From their website.

Carers Lewisham provide a range of services including advice, information, emotional support, breaks, opportunities to meet other carers, relaxation days and well-being sessions, coping strategies, specialist support for parent carers, carers of people with dementia, carers of people with mental health problems, older carers and carers who are caring for someone nearing the end of their life.

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As you can see, families can have complex relations and unpaid carers are no different, unpaid carers need that support, but they also need empowerment. This is what the Lewisham MH carers forum tries to provide.

The Lewisham Mental Health Carers forum runs once a month, just like the other 3 carer forums I try run. All MH Carer forums run in South London, but do not be fooled into thinking I just run forums since my activities spread much further than that, e.g. helping out Mental Health carers in other boroughs where mental health NHS Trusts have some idea of empowering unpaid carers in their area.

A first for the November forum was the use of a telecommunications application called Zoom, which allows unpaid carers to attend the forum via Video Chat. I am still trialing the device and checking out the hardware, but I have made it clear to members that I am happy to train them in usage.

Updates from Healthwatch Lewisham

For the November MH Carers forum, we were glad to welcome Healthwatch Lewisham.

Healthwatch Lewisham is the independent champion for people who use health and social care services. They exist to ensure that people are at the heart of care, and they listen to what people like about services, and what could be improved. Healthwatch Lewisham share their views with those with the power to make change happen, that being the Local Authority, CCG or those who provide services.

Marzena Zoladz who is Healthwatch Lewisham’s Involvement and Projects Manager has been actively engaging with both the Lewisham MH Carers forum and the Lewisham BAME MH Carers forum. She was there to update the members on Healthwatches Intelligence report, which is about a summary of reports and actions that have been undertaken by Healthwatch, including information on what they are currently working on, what work they are planning and updates on work they have previously undertaken.

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Most of the members have already read some of the latest reports are queried Marzena on why some reports are not highlighting unpaid carers, but in the future Healthwatch wants to develop stronger links to families and carers. This is something the forum is looking forward to as many feel that those who they care for is at the mercy of the health services.

You can look at more reports from Healthwatch Lewisham show below.

Healthwatch Lewisham Reports

Other queries from members were on the lack of figures and stats from the Local authority and from SLaM, many feel that SLaM Quality Improvement has a huge part to play in revealing statistics. A big query came from a member concerned that access to services via primary care is severly lacking. They feel secondary care focuses a lot more on those who have managed to use the mental health system, but those outside the system, it will be a hard struggle. There is dismay that Local Authority will be taking over more services in the area, which means it will be harder to raise queries to healthwatch.

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Marzena was kind enough to give out information leaflets, booklets, forms, pens and hygiene kits. The forum members took a few forms to feedback information from other services.

Updates from SLaM

Also at the November forum, we were joined by South London & Maudsley NHS Foundation Trust’s (SLaM) Involvement lead for Croydon and Lewisham. Plus we were also joined by SLaM’s Head of Nursing. Before I continue, a bit of info about SLaM. Since some people think they are some trend for a basketball team.

South London and Maudsley NHS Foundation Trust provides the widest range of NHS mental health services in the UK.

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They also provide substance misuse services for people who are addicted to drugs and alcohol. Their services include the Maudsley Hospital and Bethlem Royal Hospital. They also work closely with the Institute of Psychiatry, Psychology and Neuroscience and King’s College London.

They are supported by Maudsley Charity and are are part of King’s Health Partners Academic Health Sciences Centre. You might notice off my Southwark or Lambeth forums NHS Staff turn up from King’s NHS Trust or Guys & St Thomas Hospital to engage with unpaid carers.

We had some good news from SLaM’s involvement lead as they have a new inpatient Modern Matron, who I will be closely working with in the new year. There will also be a community carer’s lead for the borough, but again this might be something or the new year as a lot of carer issues are out in the community.

There is a plan for SLaM to set up a support group probably on the wards, which I feel would be great even though I am already setting up carer-led peer support groups in several boroughs. I really hope the development of the SLaM carer’s support group involves ideas from the Lewisham MH Carers forum.

This wraps up the brief update from November’s update of the Lewisham MH Carers forum.  I can see Lewisham Carers becoming more festive as I await any Xmas party from the Carers centre.

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The next Lewisham MH Carers forum will be in January for the new year.

Carers Rights Day 2019 – Your Rights as an unpaid Carer.

Giving helpWelcome again to another blog for unpaid carers, like myself. My name is Matthew Mckenzie, an unpaid mental health carer in South London. As you are aware at the time of this blog post. It is Carers Rights Day 2019, which gives a chance for unpaid carers to know their rights and helps many organisations promote the cause of unpaid carers.

Each year Carers UK holds Carers Rights Day to bring organisations across the UK together to help carers in their local community know their rights.

However I want to place my thoughts on Carers rights in the UK and why it is important Carers know their rights. This blog post is aimed at unpaid carers who are under a constant battle to be recognised.

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Your right to be heard

First and foremost, if you are new to the caring world, the very first thing you should be aware of is your voice. If you have to take the ‘cared for’ to hospital to the GP or are chasing up on the person you care for’s health, as a carer you have a right to be heard. Unfortunately it is not as easy as it sounds. Many unpaid carers struggle to engage with dragon GP receptionists (not all of them are bad) or are put off by health professionals too busy to hear unpaid carers.

Even if you as a carer are not querying about your ‘loved one’, it might be due to speaking out on what you are going through as a carer. If the carer’s voice is not heard, then you cannot begin the journey to find out more about your rights. Do not be silent as a carer, it is your right to speak out and speak up. Use your voice and request engagement, empowerment and involvement.

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Your right to view information

Not as easy as it seems. You as a carer should exercise your right to view information, whether the information is about the ‘cared for’ or about yourself. There will be times confidentiality will block you from viewing information, but that should not always be used as an excuse. I always go by the rule in ‘The more people involved in someone’s care, the better the outcomes’. If you as a carer feel you are being pushed out of you role, then the risk is the ‘cared for’ might not get the support they need. What is worse is unpaid carers feel they are struggling in their relationship to the ‘cared for’, because the health/social services have a strangle hold on the ‘cared for’s information.

Another reason for carers to query about information is to carry out their role as a carer, if you do not know what you are caring for, e.g. information about the ‘cared for’s symptoms, then how can you cope as their carer? Yes, it is some important that service users have their own empowerment, but to think they do not need any support on their recovery journey could be naive and a risk to the cared for’s health.

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As a carer pluck up the courage to ask for information, if it is explained why you cannot have it, then the services should give justifiable cause, they cannot request that they should not talk to you or ignore you.

Your right to be involved as a carer

This is different in being involved in services, I will come to explain that in a moment. As a carer, there is a risk that health and social care settings can hold meetings or make decisions that can impact on your caring role. As a carer there is a risk that you are pushed out of your role because someone has not taken the time to ask for your input. You as a carer have the right to be involved in the ‘cared for’s health.

If someone you love falls unwell, you have a right to ask what support they will get and have your views recorded. You as a carer do not want for someone to become unwell and have no plan in place for them or yourself. No one has the right to not involve you unless there are specific reasons why you should not be involved, which can be rare. There will always be old and outdated attitudes as why unpaid carers or families should not be involved, but the reasons are usually because relationships have deteriorated, especially in a mental health setting. These issues can and should be resolved.

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If an unpaid carer feels left out then they make walk away or give up caring, which can put the ‘cared for’ health at greater risk in future.

Your right to be Identified

What is worse than failing to being involved in someone’s care? It is not being identified. As mentioned before at the start of this blog post, thousands of unpaid carers are new to the caring role. It is up the health and social care to identify them. Even numbers alone are not always an accurate reflection of the carer’s experience as those who make decisions only see the numbers, but not view the experience of the carers role.

As a carer you will need to push to be identified at the GP via the surgery’s carers register, on hospital patient systems and at social care settings. If you are not identified as a carer then you will miss out on your rights and support under the Care Act 2014. Those who identify carers will speak to them in a whole different manner on how they will speak to the patient.

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If there was a big problem within the NHS, it is identifying unpaid carers, both young and old. Perhaps it could be a culture problem, or lack of carer leads and carer champions, I do not know as yet, but as we are all living longer it means the community has an even greater part to play in order to take the strain off the NHS, failure to do this will cripple the health service.

Your right to a carers assessment

As a carer, once you are identified then it should lead to a carer’s assessment. A carer’s assessment should not be used to scrutinize your role as a carer, but find out ways where you need support. It should not be an excuse to say your caring role is too hard and that you need to get on with your life, do not be put off. Demand that carer’s assessment because it can help plan for emergencies in not just for the patient, but especially for yourself. Take note there are many different kind of carer’s assessment and it does not help that some carer’s assessments are not ‘Care Act 2014’ compliant. What is worse is that carer’s assessment can be used as a tick box exercise where the assessor will quickly mark off carer queries and you won’t hear from them again.

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Many unpaid carers refuse the carer’s assessment because it does not lead to anything and is not relationship forming. Still, it is important you get an assessment so information is recorded about your circumstances.

Your right to employment as a carer

Carers also have the right to take unpaid time off work for dependents in an emergency. Returning to work after being a carer may have an impact on any entitlements and benefits you receive as a carer, but because you are caring for someone does not mean that work should force you to put the ‘cared for’s health at risk. It must take a very hard employer to stop an unpaid carer from rushing to the hospital if the ‘cared for’s health declines, but this does not mean it doesn’t happen.

Your right to complain.

No one likes to be complained about, sometime’s carers do not want to make a fuss at all, it perhaps is in their nature as the role of the carer is to put the ‘cared for’s health first and themselves last. Still, mistakes and misunderstandings do happen. As a carer it is your right to complain. It is also important to complain effectively, there are ways of complain and there are ways to do all that wrong.

There are reasons where a family or carer become angry and aggressive if they feel action is not being taken regarding someone’s health, probably because the carer has been let down time and time again. Eventually the carer may risk developing mental ill health if they are battling a system that is designed to grind them down. As a carer check on Carer’s UK or Carers Trust website or ask if there is a complaint form at your health or social service in regards to an issue.

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It is your right to complain, but please note some complaints can take ages to resolve.

Your right to some financial support.

Unpaid carers are usually caring for free, some people might even think that you should care for free anyway, but this view is incorrect, we all want to love who we hold close at no cost, but when someone’s health declines then we need that financial support to help us through a situation. If one person is caring for someone who is critically unwell, they cannot possibly work at the same time. If there is little or no financial support then expect the unpaid carer and cared for to be looking for their local food bank.

Your right to counselling and therapy.

There is this old view that unpaid carers have no idea on mental ill health, but this view is outdated as unpaid carers experience stress, depression, anxiety and god knows what else. Of course it will not be at the high level’s experienced of the ‘cared for’, but if ignored then you can bet the unpaid carer will be the next patient. Due to poor health pathways (e.g. access to health services), unpaid carers will have little to no support on accessing counselling or therapy.

If you as a carer find yourself going under strain, request support quickly. It is not worth risking your own wellbeing because you are doing what comes naturally in a civilized community ‘caring for one another’.

Your right to network with other carers.

Some people usually ask why I have set up and run 4 carer engagement forums a month voluntary. There are hundreds of reasons I can give, but the number one reason is carers should not be isolated. Unpaid carers need to know what is being developed for them and that they are not alone in their plight to be recognised or hold to account health and social services. Yes, I know NHS Trusts have governors who hold them to account, but then who holds the governors to account? Yes, you have guessed it, that would be the public, patients and unpaid carers. If carers in the community do not come together then it is harder to network and find out what an earth is happening to families and carers, it is harder to find out who is making the decisions and why.

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It is your right as a carer to ask about carer support, engagement and strategy forums in your area and if one does not exist then push for support to set one up. If they refuse then set one up anyway, even if it is at your local pub, which will eventually lead to a strong army of unpaid carers.

  • Weak brought together makes strong!

Your right to hear about your carers rights.

You might think Carers Rights Day would cover all of this, but you would be surprised. The whole point of Carers Rights Day is because there is a lack of awareness of carers rights. Trust me on this, time and time again it is harder to find at a local level your rights as a carer. Why?

Because people do not want the risk of unpaid carers exercising their rights and complaining, but it may not always lead to carers complaining, it might lead to unpaid carers becoming empowered in their role. As a carer you should ask what are your rights? Push for courses at a recovery college about carers rights. Do not be put off and referred to the local carer’s centre, because health and social care should also seek to empower unpaid carers as well.

Your right to be involved in services at ALL levels.

Being involved in health and social care is completely different to being involved in your ‘cared for’s health. I am involved at my local mental health trust at a very high level. Come to think of it, I am involved in NHS England, The Royal College of Nursing, CCG’s and many other mental health trusts. As a carer I use my experience to train nurses, engage with other carers, engage with health commissioner and even visit mental health wards.

Involvement is a tricky issue because unpaid carers do not really have the time, in fact most unpaid carers would like to put energy into planning their future, they are well aware that they cannot be an unpaid carer forever, which is why Carers Trust is tripping over themselves to run a project on getting unpaid carers back into employment and skills support.

Still in the meantime unpaid carers should be involved in health service design, promotion and even delivery via Co-production, which in itself is a whole complex ball game. Unpaid carers should be encouraged to sign up to an NHS trust involvement registry and peer support should be given. We cannot have an NHS system doing things to and for carers without carer input.

Your right to a health check up.

I should have put this further up the list, do to the time of this blog post I had my check up, but unfortunately not as a carer, it was a health check up every 5 years or so. This could be improved upon because unpaid carers are at risk of developing illness due to their role. There used to be a government initiative for carer check-ups, but due to the austerity drive (which has lasted for years) almost so much has been cut, no matter how commissioners play it, there are lack of GP surgeries, lack of tailored health systems and a lack of health staff.

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As a carer, you should have the right to have a check up on your health. Do not neglect yourself, if your health fails then there is a risk that you cannot care for the person you support.

Your right for care planning for yourself.

There was and probably still is a drive at my local Mental Health trust for emergency care planning. This is because not all unpaid carers are alike. Older aged carers worry they will outlive the ‘cared for’ and wish for someone in plan. Still, carers of all ages want someone in place in case something happen to them. Think of it as some form of insurance. I have taken input from members of one of my carer forums and found through my Triangle of Care contacts a good example of carer planning for the future from Birmingham & Soulhil NHS Trust.

https://www.bsmhft.nhs.uk/service-user-and-carer/carers-families-and-friends/planning-for-the-future-and-emergency-planning/

PDF Pack below.

https://www.bsmhft.nhs.uk/EasySiteWeb/GatewayLink.aspx?alId=72346

Your right for education and skills training.

Unfortunately it is really difficult for unpaid carers to get access to education or training, because they will need this for the future or even now to get some financial support. Not all carers want handouts from the government, unpaid carers want to feel empowered and find work their own way, but without skills or training then it is impossible.

Your right to be referred.

Last but not least, as a carer you should be referred for extra support. BUT NOT constantly referred on and on and on in a never ending circle, I would laugh if such a situation was not so tragic.

Most unpaid carers are are referred to their local carers centre, but due to lack of staff and lack of resources, the carers centre can struggle, so unpaid carers should be referred to other means of support.

Conclusion

I got up around 3 in the morning to right this because I feel strongly unpaid carers have a mountain to climb due to knowing their carer’s rights. The ones I have listed are only a small part of what a carer’s right constitutes. If you are an unpaid carer, please exercise your carer’s rights and let other unpaid carers know their rights.

You deserve it.

Guest post by Hannah MacDonald -First day of being sectioned.

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In 2007 I was sectioned under the mental health act with my nursing uniform in my bag. The whole experience of my first sectioning was shocking, traumatic, shameful and confusing.

I was taken by a psychologist, who I was seeing for Cognitive Behaviour Therapy,  to the Emergency Psychiatric service because he was concerned about me. I was taken to a room with no windows whilst the psychologist spoke to the Emergency Psychiatric team. I remember feeling catastrophic, trapped and concerned that I needed to get to work.

I was then assessed by a doctor who asked me deep psychological questions which for me was beginning to open a whole can of worms and was traumatic and distressing. Through the whole assessment I kept thinking, I need to get to work – I can’t let the ward down.

Then I was left in the room by myself, I felt stressed and that the room was closing in on me. After what felt like an eternity to me, a number of people entered – I had no idea who there were and all I remember of them is their shoes as I was no longer looking up. In my medical notes it states that my speaking had become very slow and I was not responding to questions. My memory is that I was extremely overwhelmed and I just wanted to leave, go to work and no longer be asked anymore psychological questions that I couldn’t answer and were confusing my mind.

All the people left then after a short time returned to let me know I was sectioned. I went into sheer panic. I thought instantly that I would lose my job and never be a nurse again. I keep repeating – I will come in voluntary, you don’t need to section me. I had not realised that when they had asked me to go into hospital I basically had had no choice that if I didn’t say yes I would be sectioned. In my mind I just kept thinking about the ward I worked on, that they would no be able to find cover for me that day. When I realised I was sectioned I was absolutely terrified. One of the staff said don’t worry we will help you – that comment has haunted me and felt like a betrayal to this day because for me my situation became so much worse and I call the years between 2007 – 2012 my lost years.

I was taken up to the ward and a nurse read me my rights under the mental health act. I was so overwhelmed that the only thing I remember her saying was that if I didn’t take the medication I was prescribed by the doctor, it would forcefully be given to me by injection. I was completely terrified.

I rang the ward I worked on and told my manager what had happened, she was so compassionate and supporting she put on the phone the HIV mental health nurse that worked on our ward. It was her that with care explained my situation and where I could get help and support.

After this phonecall I was taken to a bedroom and searched. All I had with me was my crossbody bag which contained my keys, wallet and nursing uniform. When there got to my nursing uniform there noticed that the name badge and my watch had a pins on then to fasten to the uniform, they took them off and said they had to take them off me. I remember wondering why, it has never crossed my mind that I could use them to self harm. That action by the nurses, in a moment, had stripped me of my identity as a nurse, I thought I will never be a nurse again and my thoughts of suicide increased 100 fold. The nurses had not even considered what they were doing to me psychologically.

I was then left in a freezing cold room because it was November and the windows in the room didn’t close properly. Lost and confused I went to the lounge and it was a patient who asked if I was okay. She then made me a cup of tea, gaave me some of her own toiletries and explained to me how the ward and hospital worked. I will always be thankful for her kindness that day.

My first admission was 8 months long. In that time I completely deteriorated. I was forced to have ECT Electroconvulsive therapy with a second opinion doctor saying that I did not have capacity to understand the benefits of the treatment. But in reality this treatment made me think I had completely lost my mind. In addition, I was financially and sexually exploited by another patient, was deprived of my liberty and embroidery, thought I would never be a nurse again and was told by my eldest sister that if I took my own life I would go to hell. Though I was taken off section 3 in August 2008 sadly the whole experience increased my desire to end my life and for the next 5 years I became a revolving door of the mental health system.

However in 2012 I was sent to a therapeutic community where I was given 4 years of psychodynamic psychotherapy which has meant that in 2019 I was able to complete a return to nursing course.