Tag Archives: carers

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.

International Stress Awareness Week- How stress can affect carers

Fotolia_73087289_XSThanks for stopping by, since the release of this blog we recently had International Stress Awareness Week 2019.  I wanted to write something up during that week, but unfortunately I missed the boat, I guess I have been so busy.  Still, unpaid carers suffer from a lot of stress and I still want to highlight such an important issue.

 

What is International Stress Awareness Week?

Promoted by the International Stress Management Association (ISMA), although many other mental health organisations are free to promote it. The International Stress Management Association [ISMAUK] is a registered charity and the lead professional body for workplace and personal Stress Management, Well-being and on Performance. They usually promote sound knowledge and best practice.

International Stress Awareness Week usually runs from Monday 4 – Friday 9 November.

The theme I think for national Stress awareness week is “Resilience” which is defined as how we deal with and recover from highly pressured or stressful situations and experiences. Off my video I talk about finding resilience in great detail. So please have a watch when you can.

I have noticed a lot of mental health organisations promote how stress can effect the workplace.

Just to note, I have done a lengthy video blog on the affects of stress and how it impacts not just carers, but everyone, to view press the video below.

Every year, in the UK an estimated 17 million days are lost to stress, anxiety and depression.

Some Facts about stress

Stress is the feeling of being unable to cope as a result of too much mental or emotional pressure.

Common signs of stress can include sleeping problems, loss of appetite and difficulty concentrating. You may feel anxious, irritable, experience rapid thoughts and worry constantly.

Here are some quick facts, but to hear more about them, please check out my video.

1. Long-term stress can increase your risk of mental health disabilities
2. Frequent stress decreases your immune system
3. Relationships play a key role in your daily stress levels
4. The right amount of stress is beneficial, but too much is deadly.

Stress and unpaid carers

As you probably already know, I am an unpaid carer and have suffered a lot of stress in the past, even now I admit sometimes stress gets the better of me.  Sometimes that is ok, but allowing stress to consume you can have devastating side effects.

I have provided a list below on how unpaid carers can suffer from stress, take note that the things mentioned are not comprehensive, but at least the most common.

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1. Being overloaded in providing care can cause all sorts of stress
2. As mentioned before relationships with the ‘cared for’ can also be stressful
3. A major form of stress is the health or declining health of a ‘loved one’
4. Sometimes carers have to hold down a job, if caring becomes too much, then work performance can suffer.
5. Financial issues can be an extra form of stress for unpaid carers coping with lack of support.
6. If caring becomes difficult, this can affect sleep and eating habits, these are very stress inducing.

How does stress affect us?

Just to note, stress affects people differently, what happens to one person might not happen to another.

1. Our emotional behaviour changes, it is easier to become irritable, sad and depressed.
2. You can also feel very hot and sweat when suffering stress
3. Constant stress can also affect the body in many ways including headaches, stomach issues and blood pressure.
4. Stress can certainly affect your breathing as many begin to breath faster as their heart beat increases.

Dealing with Stress to find Resilience

Below I have listed things that can help you find resilience in combating stress.  For more information, please check out the video.

Silhouette of man showing his hand on sunset sky background, Successful business concept.

  • Breathe.
  • Dance.
  • Give yourself enough time to do things, planing can go a long way.
  • Go for a walk in the park.
  • Go swimming.
  • Jog or find other ways to do some exercise
  • Laugh
  • Listen to music.
  • Meditate.
  • Pet therapy can be useful. Connecting with pets.
  • Read.
  • ** Recognize the Signs (number one rule).
  • Stay Connected with others
  • Talk to Your Doctor or Health Care Provider
  • Take a yoga class, or give yourself one.
  • Take warm, relaxing baths.
  • Watch television.
  • Water and admire your plants.

Conclusion

It is important to look after your health, especially if someone is relying on you. If you do not recognise or deal with stress levels, then stress will deal with you. Your health will become a major factor in supporting others, let alone yourself. Find out more about stress by visiting the ISMA site on https://www.isma.org.uk/

Carer traits and characteristics

Finger art of a Happy couple. The concept of couple laughing.Welcome back, Its not long until “Carers Rights day”, which takes place on the 21st of November. I am sure to do a blog and maybe a video about it, but still it is a couple of weeks away, but keep a look out for local carer events in the meantime. This particular blog is on carer character traits.

Basically when people think about unpaid carers, they often think that the person is just caring for someone. In a way there are correct, but delve a little deeper and they could be off target. There is a whole lot more to a carers world than what people might think.

So I have decided to list and briefly explain some unpaid character traits, this blog is aimed not only at health professionals, but carers themselves who might wish to understand what they might find helpful on their carers journey.

Please take take note, not all unpaid carers are the same and due to trying to keep the blog post short, I have missed out a lot of carer character traits and skills.

Providing a simple hug.

Not all carers do this, it really depends on the relationship with the ‘cared for’. Some unpaid carers are very close to the person suffering either mental or physical ill health, but giving a simple hug to that person can help more than any words can say.

Authenticity

Just caring for someone shows that you are wearing the badge, you are wearing the carer’s badge and no one can say you have not been there. If asked to speak about your carers journey, then you will understand. An unpaid carers journey can be difficult, full of tension and a roller coaster ride. As a carer you can expect to take some massive blows, but at the same time you are growing stronger in your cause.

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Being a shoulder to cry on (very difficult)

Not always easy especially if the ‘cared for’ is distant from you, but as a carer you can always be there as a shoulder to cry on. There will be times that the ‘cared for’ will be let down by everyone, be it friends, health systems and so on. If you are close to the ‘cared for’, just being a carer will give them the opportunity to be the last person they can cry to.

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Being Present (most important!!)

The most important trait of an unpaid carer. There are only a few other ways to care, but being there is the ultimate role of a carer. Some people have big families, but not everyone in that family is going to equally care for the ‘cared for’. Sometimes the carer is the one who will sacrifice or put on hold their life to provide that much needed support. A carer will be there at hospital appointments, doctors appointments, care plan assessments, benefit assessments, they will provide medication or chase things up and more. Being there for the ‘cared for’ is what it takes to be a carer.

Being there when times are tough (difficult)

Being there is NOT enough, its when the chips are down that the true worth of being a carer is on the line. Its no good providing support when the crisis is over, but I am aware that carers cannot be around the person all the time. I am also aware that it is not a criticism of carers who tried so hard, but were pushed away, especially mental health carers. Still, there will be times when the impossible may be asked of you, as a carer you will need to be there especially when there is a crisis.

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Believing

There are not many rule books on being a carer, there has been times when I am thinking to myself am I doing the right thing, because no one can really tell you that you are living your life the best way. There were times my ‘cared for’ hit crisis after crisis and I was banging my head against a brick way with all the bureaucracy, confidentiality and red tape. I was even dealing with bullying from NHS staff siding with the ‘cared for’s’ criticism of me and to be frank, I was on my own. The keyword is ‘Belief’, you as a carer might have to dig down and start believing in yourself. What are you caring for? What are you fighting for? What are the costs? The sacrifices? Is it all your fault? Sometimes only you can answer those questions.

Compassion

Very close to being there as a carer, you will need to show compassion, patience and to be kind. It is not easy to do if you are under stress or constant pressure, being compassionate can even extend to others if you practice being compassionate to the person you care for. If you lack compassion, then you could do damage to the relationship.

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Confidentiality (Can be very difficult)

Sometimes carers have to be confidential about who they care for, but most times a carer will have to deal with confidentiality. It is frustrating because in the end it will be you that providing the carer and support, but how can you do your role if no one is saying what to expect for the ‘cared for’. Its like they are saying ‘Just get on with it’, when the patient is discharged into your care. I have noticed a culture where health professionals state the ‘cared for’ is discharged to the social worker’s care or the care coordinator’s care, but what happens they move on from their jobs or leave? The carer is the constant person in that role and should never be pushed aside or forgotten. Learn how confidentiality works, especially when Carer’s Rights Day takes place on the 21st of November.

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Connection

Being a connection to someone is not easy at all. It depends how close you are to the ‘cared for’. Sometimes a carer is just a person in name and role, but being a connection to someone is highly psychology. There are whole books on the subject on connecting to others and the subject is also one of the ‘5 ways of wellbeing’.

https://www.nhs.uk/conditions/stress-anxiety-depression/improve-mental-wellbeing/

It is not always easy connecting to someone who is unwell, but it can benefit yourself as well as the ‘cared for’.

Empathy

Similar to compassion, Empathy is the capacity to understand or feel what the ‘cared for’ is experiencing. This is why many carers try hard to work out what the situation is, so that they can provide adequate support and care. Without empathy then you are making guess work, but sometimes it is not always the carers fault. If unpaid carers are pushed out due to confidentiality or not involved, it is difficult to understand what the person is going through, especially if its mental health. Remember, if the health professional is not always present and the ‘cared for’ is very unwell, then it is usually up to the unpaid carer be it friend, neighbour or relation.

Helping (knowing when to help and how)

Sometimes caring is a grey area, there is more to caring than just helping with physical or mental health support. It is also being around to help, this might be arranging meetings, advocating, helping the health professional, helping with money situations and so on.

Super Dad Juggling

Hope (Very common among carers)

Without this trait, you might even want to give up on caring for someone, there should be some form of hope that the ‘cared for’ will recover or at least live with the illness. Sometimes unfortunately there is no recovery, so all you can hope for is to be a witness to the person’s suffering, but deep down inside all unpaid carers hope for some change.

Love (most common thing among carers)

Another common trait with all unpaid carers. You care because you love the person or are emotionally tied to them. Love is a vague word, but without some form of love, it is difficult to care for someone let alone care for anything. Sometimes people overlook the love between carer and ‘cared for’, but it is there. Even if the carer had to walk away from their role, this still could be done out of love and when things really go wrong, then love hurts.

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Loyalty

Very difficult for carers to do, but being loyal to the ‘cared for’ can be an important trait, but what happens when the ‘cared for’ refuses help? When does the question of being loyal become a risk? This is when carers need to break confidentiality and raise the issue if the ‘cared for’ is at severe risk. E.g. reporting to the doctor, social worker or another professional.

Open and loving friends

Not really a carer trait, but something a carer would find helpful. Unfortunately, friends tend to go off packing when having to deal with a carer fighting something depressing. It does not help that carers due to their role will lack a social life, so it is harder to make new friends, but if you are lucky to have friends around who are open and understanding, it can help you in your carer journey.

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Openness.

A risky trait, but expect to use it sometimes. As a carer you will have to be honest about a situation, you might expect to be put between a wall and a hard place. Basically when the ‘cared for’ is refusing help, you will have to raise the call for help, even against the ‘cared for’ wishes. A carer will have to be truthful and open about what is going wrong and expect your relationship with the ‘cared for’ to decline, but think to yourself, what is the risk? You might be thankful one day that you were open and honest about something. Expect the relationship to be slow to build back up again, if ever.

Phone call to check on how someone is

As a carer, it helps to use many tools in your carer’s journey, this is often used if your a distant carer (someone caring from a distance). Even if the ‘cared for’ is not in crisis, a carer might call to see how things are, you might never know what the ‘cared for’ might say. Take note, that with the advent of smart phones, it might help to add the person on Whatsapp, Skype, Facebook or other applications.

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Quality time

Sometimes it is not always about care, care and caring. Spending quality time with the person can help make a difference. Think of it this way, what was the person like before they became unwell? Your relationship might have changed somewhat, but deep down they are still that same person. Sometimes spending quality time is what is needed and expect to do this as a carer to help connect with them.

Safety (common among carers)

Did I say common among carers? It probably is the number one rule book for unpaid carers. You might think providing a safe space for the ‘cared for’ is all that it is, but that is not the full story. Ever heard of the consequences when things go wrong in the health system? Carers will sometimes protect the ‘cared for’ especially when serious incidents will occur, think of wrong medications provided, or wrong decisions putting the ‘cared for’ at risk. Then it can be a tug of war when the carer has to push for the ‘cared for’ to get that support from the health and social care system. Overall the carer will have to be a shield for many things and expect to take some blows.

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Show up physically and mentally

Not the same as being there, expect to take on health and social care settings. Sometimes you as a carer might think some things are being done as a tick box, well you could be right. As a carer you will have to deal with the following professionals.

  • Clinical Psychologist
  • Psychiatrist
  • Nurses (different Bands)
  • Mental Health Counselor (families)
  • Social Worker
  • Care Coordinator
  • Ward Pharmacist
  • Occupational Therapist
  • Ward Manager
  • Admin for services
  • GP
  • Peer Specialists
  • Advocates
  • PALs Team
  • Home Treatment team staff

Yep! and this is only the HALF of it. So as a carer how would you prepare in an important meeting, if you are not sure what that person does or if the professional is being difficult? Well, I am sure at some point I will blog about engaging with professionals, but as a carer, do not expect the ‘cared for’ will do the legwork.

Smiling or trying to

As a carer you don’t have to do this, in fact it is better to seek support if you are feeling down rather than pretend and put on a false smile. It does obviously help to keep one’s spirits up, but be honest with your wellbeing and reach out for support for yourself as well.

face

Someone to really listen (listening skills)

This is very important for unpaid carers. If the ‘cared for’ has no one to talk to then expect to listen and avoid saying much or criticism. This is not something easy to do, because it depends on your relationship to the ‘cared for’. There has been times I have had to listen because the person I care for ended up ranting due to being unhappy with how she was treated. It was just because there was no one she would trust to rant to instead, not even the Samaritans. In the end, I just kept quiet and listened, then walked away hoping that her complaining helped in some way. As a carer, expect to listen, but also expect to learn some listening skills.

Time alone (Important!!)

It is so important that you as a carer get time alone for yourself, it might be for recharging your energies, thinking things through or just relaxing. This is probably because a carer has to go through a lot, especially all the things that can play on the carer’s mind. If a carer cannot get time alone, then they could themselves become the next patient.

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Trust (Very common)

In health professional we trust! As carers you will need to put your trust in professionals because you cannot do everything yourself. You will have to hope and trust that your doctor will involve you in the ‘cared for’ situation. If that does not work, then pray the doctor is skilled in being diplomatic enough to remind the patient why they need support from those close to them. Sometimes doctors tend to take the easy way out and let the patient’s word be law, but life is not always as simple as that, why? Think about the serious incidents when the carers or public were right about someone being at risk and the health professionals were wrong. It does happen and unfortunately it won’t be the last, but until then the carer will have to trust in others and trust the ‘cared for’ will seek support.

Words of encouragement (what words to use)

Expect as a carer to encourage the ‘cared for’ to not give up hope. The carer will need to be skilled in being supportive with words and not only just in listening skills. In fact a carer may end up becoming some form of counselling for the ‘cared for’, but only if support structures are lacking.

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The conclusion.

Unfortunately these are just some of the carer’s traits in the carers journey. The carers world can be a difficult long struggle, but it can also be rewarding as you share the ‘cared for’ life successes, hopes, dreams and struggles. It need not be unbearable tough if you learn as much as you can on what it means to be a carer.

Good luck in your caring journey.

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