Tag Archives: carers

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.

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  • 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.

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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.

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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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Lambeth MH Carers Forum update October 2019

20140710_143445Welcome to the October update of one of the 4 carer engagement forums I either promote and chair. This particular forum is over in Lambeth and kindly hosted by Lambeth Carers hub.

Carers’ Hub Lambeth is an independent local charity based in Brixton. They are there to relieve the stresses experienced by unpaid carers who live in or care for somebody living in Lambeth. This also includes those carers trying to care for someone suffering from mental illness, although I will use the term suffering lightly since some service users feel there is strength in at least fighting through mental health.

The Lambeth Mental Health Carers forum is a platform for carers to come together, discuss and engage with services. It is important for unpaid carers to have that relationship with community, social and mental health services. Carers need to have that space where they are empowered to ask why certain service provision is the way it is.

Most times unpaid carers are satisfied with the answers they get. Other times, such answers lead to more questions and some questions might even go so far to be quite complex. It is not enough for unpaid carers to tell their stories time and time again. Carers should be encouraged to point their noses into things that affect the carer’s journey.

For the October forum, we had Rebecca Martland visit us. She is doing a Research project on ‘Feasibility of high intensity interval training in improving physical and mental health in inpatients with severe mental illness’. Yes, it is a long title, but the project is critically important because so many patients suffer from physical ill health due to inactivity and having difficultly finding someone to provide mentoring in physical health training.

Rebecca Martland who is a researcher from the Institute of Psychiatry, Psychology and Neuroscience leads on this research. The IOPPN is a research institution dedicated to discovering what causes mental illness and diseases of the brain. In addition, its aim is to help identify new treatments for them. Rebecca also works for South London & Maudsley, where the IOPPN is in partnership with SLaM.

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Rebecca  wants to run more Focus groups with inpatients with SMI, carers of patients with SMI and staff to scope perceptions of attitudes and practicalities of the HIIT study.

It was great for Rebecca not only to have attended the Southwark MH carers forum, but also engage with carers from the Lambeth MH carers forum in the same month, which I admire greatly. I was happy to also hear some carers have signed up to her focus group to give ideas on the research.

The forum then spent some time going through last month’s minutes, which had been drawn up by James Holdcroft from Carers Hub Lambeth. James had done a brilliant job recording difficult meetings and helping us members keep focus on issues raised.

We discussed a few things from the minutes, one being the consultation on what will happen to Lambeth Hospital, others discussions where on SLaM’s patient record system and also discussions about carers assessments and tracking the numbers of unpaid carers in the borough Lambeth.

Next up at the Lambeth MH carers forum was Robert Stebbings the Policy and Communications Officer from Adfam. Robert was here to update the forum on the work Adfam has been doing throughout the year, specially with families and carers.

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Adfam is the national charity working to improve life for families affected by drugs or alcohol. They work heavily with families caring for someone affected by drugs or alcohol. Their vision is allowing those affected by addiction to have the chance to benefit from healthy relationships, be part of a loving and supportive family and enjoy mental and physical wellbeing.

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Adfam do a lot of campaigning and policy work. Off their site it was amazing to see how many groups their CEO was working with, those being.

  • The Advisory Council on the Misuse of Drugs
  • Commission on domestic and sexual violence and multiple disadvantage
  • Mentor-ADEPIS steering group
  • Safer gambling campaign advisory panel
  • Manchester Metropolitan University’s substance use and end-of-life care steering group.

One of the members of the Lambeth MH Carers forum had even been involved with Adfam visiting parliament to discuss the latest initiatives on addiction, which I was very proud to hear carers working hard to be heard.

Robert spoke about the difficulties Drug, alcohol and addiction can cause to families.

Those being

  • Financial Impact
  • Constant worry and anxiety on families affected
  • Bereavement, especially when addiction leads to someone taking their life
  • The problems of trust and denial.
  • Isolation
  • Impact on wellbeing and health
  • Feeling no light at the end of the tunnel
    ….and other life-changing impacts on families.

Robert also explained to the forum about the issues of stigma, which goes hand in hand when someone is suffering from addiction, as although addiction is recognized as mental ill health, a lot of people still see such behaviour as a matter of choice.

Plus he discussed what Peer Support and Advocacy groups Adfam have been providing and how they work.

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We were told how families and carers felt the following issues were a difficult path to navigate being,

Confidentiality
Loved one not honest with professionals or the nature of their problems
Service cuts and configurations
Plus families having to keep pushing the benefits of care involvement to professionals.

You can find out more about Adfam from their link below.

https://adfam.org.uk/

The members of the Lambeth MH carers forum discussed how the Carers UK conference went and were pleased I had a presence there. There was a request that I do a presentation on engaging with GP’s. The members are also very excited about next month’s visit from by the MP Helen Hayes. They probably are interested in what is being done for mental health in the borough of Lambeth and updates on how the borough of Lambeth & Southwark is supporting unpaid carers.

Lewisham Mental health Stakeholder event 2019

imageWelcome to another blog from South London unpaid carer Matthew Mckenzie. On this particular blog, I am covering how the Lewisham Mental Health Stakeholder event went. Health Commissioner stakeholder events usually run once a year, these events are usually borough wide and incorporate the community regarding health interests.

The theme of the Lewisham CCG Mental Health Stakeholder event was on “Me and my community”. The theme was to help bring the community together to discuss, plan and celebrate how Lewisham as a whole are working towards the mental health and well-being of its community.

The event took place over at Lewisham Town Hall – Civic Suite from 9:30 am till 4:30 pm. If I remember correctly, the event takes ages to plan and I believe such a stakeholder event was not run in 2018. So the event was great received, due to many mental health service updates and changes in the community.

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The stakeholder event had many stalls from providers, workshops, sessions and talks and presentations. Those involved in the event were of course Lewisham CCG, Lewisham council, South London and Maudsley NHS Trust (who provide MH services in the area), Lewisham Healthwatch, Bromley, Lewisham & Greenwich Mind, Compass (services for children), Lewisham Carers, Department for work & Pensions, Sydenham Gardens, GCDA, Lewisham college, Lewisham & Greenwich hospital trust and more.

To open the event, we had the welcome from Councilor James Rathbone, who is currently Lewisham’s Mental health Champion. Next was the Lewisham Mental Health Alliance with updates provided by Donna Hayward-Sussex – who is SLaM’s Service director and also Dr Charles Gosling who is the CCG’s senior clinical director.

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Since the event was themed for Black history month, plus the London borough of Lewisham being a diverse community, we have an update on health inequalities in the borough from Dr Catherine Mbema who is the Director of Public Health in Lewisham.

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Next up was CEO of Your Voice in Health and Social Care who have partnered with Carers Lewisham. Tim Spilsbury spoke about the difficulties unpaid carers face in the borough of Lewisham and how the charity is seeking to tackle those issues. To my surprise he spoke about the Triangle of Care, which is a policy aimed at buildng a working collaboration between the service user, professional and carer.

One thing critical about stakeholder events is giving the community a chance to ask questions or bring out statements, so I was glad to see a panel session consisting of those who spoke previously including the Joint commissioner of Adult Mental Health and Head of services for BLG-Mind. We certainly had some hard hitting challenging questions from the audience, although I felt some great work has been done by the services so it was a shame no one mentioned anything about that.

Next up after the 20 minute break and some networking were the Workshops. The aim of the workshops was to either educate the community on mental wellbeing, provide updates on services, a way to promote services and allow for stakeholders to connect with the community.

Prevention – This workshop looked at Social Prescribing (connecting people in their community)

5-ways to Wellbeing – This workshop taught by Lewisham Healthwatch looked into those who work with children and young people.

What is the Relationship between Mental Health and Internalised Racism? – This workshop taught by Hillna Fontaine, explored the complex issues of race and mental health.

Carers Workshop – This workshop co-produced by some of my members of the Lewisham Mental Health Carers forum and Carers Lewisham and myself.

Mental Health Equalities – What we know, our ideas and your suggestions – This workshop facilitated by SLaM equality team looked into what the Trust is doing to improve the experiences of Black, Asian and Minority Ethnic (BAME) service users, carers and staff.

Social Inclusion Recover Services; Paths to Recovery at Sydenham Garden – On this workshop, we could find out more about Sydenham Garden’s work – helping people in their recovery from mental and physical ill-health in Lewisham.

Mental Health in Schools: Challenges and solutions – This workshop aims to explore mental and emotional health challenges faced in school environment.

Healthy Walk – An excellent workshop, were attendees found out about the greenspace, gentle exercise and good company are great for physical and mental wellbeing and were actually walking outside.

The Lewisham Wellbeing Map: showing the great places for health in our borough – This workshop looked into a social prescribing map for link workers, navigators, and signposters.

Help in a mental health crisis – A workshop taught by the manager of the Ladywell Unit looking at where you can access help in a crisis and what you can expect from services Alternatives to going to A&E

DWP – Forest Hill and Bromley Jobcentre – The Partnership Team and the Disability Employment Advisers provided people with an insight to what is available to support those with Disability and Mental Health under Universal Credit and Employment Support Allowance

Wellbeing Education at SLaM Recovery College – Lastly we Trainers from SLaM Recovery College will discuss how the college operates, the benefits of attending for SLaM service users, carers/supporters and staff members.

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A quick mention on the carers workshop I co-produced with members of the Lewisham MH carers forum, we looked at ways to involve unpaid mental health carers in the community as carers like myself can be isolated, lacking support and driven to desperation when supporting someone with mental ill health.

I cannot thank Lewisham CCG enough and also Carers Lewisham and YVIHSC for helping and attending.

All in all, I thought the event went very well with special thanks to Karin Barthel who is the senior CCG comissioner for involving myself and carers lewisham to run the workshop in co-production.

I hope other CCGs will continue to run stakeholder events, or I am wondering how do they engage with their communities when it comes to mental health and wellbeing.

Thanks for stopping by.