The stigma of an unpaid Mental Health Carer

matthew-mckenzieWelcome back to another blog from unpaid carer in the south of London. As world Mental Health Day draws near, a lot of emphasis is placed on those suffering angel problems. I find it quite important that you must not forget the hidden Heroes who’s tape in when their loved ones are in most need. This is not to take away the difficult battles mental health survivors face, however all too often sigma hits out at more than one person.

Mental health stigma hits the family, the friend, the husband, the wife and even the neighbour. This blog will concentrate on another type of stigma, which can be all Too Well forgotten. I am going to talk about carer stigma. Now it is very important that not all unpaid carers suffer from carer stigma.

First you must differentiate what or who is an unpaid carer. I am talking about the person who suddenly finds themselves caring for someone close to them who has been unfortunate to pick up either physical or mental health problem. I am not talking about paid care workers, although I do admit care workers to find they can have a difficult job, they are paid for their role and can be protected by Union.

Arguments.

With carers they are not trained and often care out of closeness and love for the person they are trying to look out for. It gets really difficult if that person has a mental health illness.

The types of carer stigma.

So Let’s Begin, I cannot really produce an exhaustive list of different types of carer stigma, but the ones that i am showing i’ll probably the most recognisable types of carers take life out there.

Depends on the illness.

When a loved one become very unwell, he often try as hard as he can to support them. The problem is the more chronic the illness the more is stigma lash out. A good example is when a carer is caring for someone suffering psychosis, those suffering from this difficult illness can often present challenging behaviours. If such behaviour is out in public, then the challenge is not only faced by the mental health Survivor but also the carer.

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It only takes one person to ridicule the suffering from a mental health problem. This can then extend to the person family, the risk is once a community starts to gossip about the situation, it can cause the carer to become more isolated. This in turn leads to stigma of both mental health and carer. As a note not or carers go through this and it probably can depend upon the illness anyway.

The Label

Although not as devastating as the first form of carer stigma, it still can be rather destructive. Some people carry on caring and supporting those close to them out of desperation. They carry on caring regardless of the support mechanisms that amen applied to the family network.

At first it seemed really brave, it is great to hear a carer battle it out no matter what the situation. However there is one big problem, no matter what are the carers might say to this situation, the person still feels that they do not deserve the term of being labelled a carer. The problem is that this person will then like the support network available for carers.

Clashing forms of relations

This type of stigma is actually quite similar to the one mentioned previously. A good example is when a person marries someone they marry for better or worse. When the worst does arrived, the person cares especially out of love. They care because they are either the husband or wife. If you try to tell them that they are now a carer, that person may become very irritated. They refuse to be labelled as a carer, and yes this is the right, but the risk is lack of support network available to them.

This care stigma can also extend to other relations within the family, another good example is a young person caring for a parent, or even especially a young carer. Can you imagine as a child having to suddenly provide care for an older adult suffering a mental health condition?

The terrible characteristics of an unpaid mental health carer

There are several characteristics, which are aimed at carers. I am going to go through a few that come off the top of my head.

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Being labelled as lazy

All too often we have to work for a living, we have to pay our dues. The harder the work we do, the more we expect to be paid. The more complex the role, the more we expect be rewarded. There is this review going around that the Caring role is fairly easy, because some people think that it is easy, they think that the carer does not have to do much at all. This can lead to carers being labelled as lazy. Once a person is targeted as lazy, they do not really want to be labelled as a carer.

Being blamed

This is quite common in the field of psychology/psychiatry, especially in America. When someone is unfortunate enough to develop a mental health problem, all too often psychiatrists tend to probe the family structure. All too often, it says if the carer is not doing their job properly. It might even go so far as to state that the carer is causing the mental health relapse or has caused the mental health problem to manifest itself in the first place.

One of the main criticisms of psychiatry, is at one end it might exclude the carer in their supporting role/care plans or confidentiality and at the other end label the carer as the problem within care plans and assessments. This can lead to a person not really wanting to find the energy battling a mental health system that can misunderstand the caring role.

Confrontational

Another good example of how the mental health system might fail families and carers, is if the carer has experienced failures in support of their loved ones and even the care of them self. It then becomes only a matter of time before the carer becomes more confrontational. No one really wants to be labelled as aggressive, uncooperative and confrontational. This is just another label a person can do without, so why would they want to be labelled as a carer?

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Risk of declining health

Again this might depend upon the type of illness the person is trying to care for, the more chronic the illness, the most stressful situation is for the carer. Since the NHS is under severe strain, a person would have to think hard and long before they would want to commit themselves in becoming an unpaid carer. It is like that there has been a secret contract, stating that the carer now must take the role of the lack of staff within the health system. This could be administering medication, advocating, understanding side effects, understanding social welfare, mental health legal matters, engaging with doctors and also mental health advocate and peer supporters.

Is there any wonder why carers can end up with depression, anxiety, stress and worry? One could say that mental health illness can be catching.

Hiding it all away

I’m afraid I have bad news, for what I have mentioned is only the tip of the iceberg when it comes to Carer stigma. I did not want to make this blog post overly long. With the above issues mentioned, is it any wonder why someone wants to hide themselves from being labelled as a carer?

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Lewisham MH Carers forum September 2018 update

133This is the last of the four MH carer forum update for September. This one runs from carers Lewisham, the Carers Centre is run by and for carers: many of their staff, trustees and volunteers are or have been carers.

The carers Centre provides information, support and advocacy for carers for the borough of Lewisham. You were hoping to have the head of social care for Adult Mental Health attend the forum, but she was unable to make it due to being unwell. The forum members are interested in her role and how it impacts on families and carers.

So instead we discussed the SLaM carers strategy and how that impacts on families and carers throughout the community.

However before I presented the current mental Health Trust carers strategy, I fed back the recent updates requested by the mental health carers forum. We are looking forward to Dr Torstein Stapley the Psychologist with Centre for Anxiety Disorders and Trauma attending in October. Plus we hope Michael McHugh the Psychiatric Liaison Nurse from Lewisham A+E Hospital attends in November.

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Other updates included that the forum agreed that it would be good for GP’s to know more about how to support MH carers. Unfortunately, SLaM does not have funding to reprint their Carers handbook and couldn’t prioritise doing this in numbers that would cover all GP practices. The SLaM Patient Information Manager suggested that SLaM ask Lewisham Clinical Commissioning Group to put an item in their GP newsletter.

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The Lewisham MH Carer forum members are interested to see the Lewisham CCG GP newsletter.

After some discussions I presented the forum about our Local Mental Health trusts Carers Strategy. We looked at the following.

  1. A Birds eye view of the document.
  2. Carer governor statement from the strategy.
  3. The Chief Exec’s Summary.
  4. SLaM’s Definition of a carer.
  5. Principles for Practice and what it means.
  6. Triangle of Care and what that means.
  7. Family & Carer recognition.
  8. Carers Assessments and its implications.
  9. Carer Involvement.
  10. Informing families and carers.
  11. Supporting Families and carers.
  12. How staff are developed to work with carers.
  13. Working in partnership with community groups.
  14. Carers Charter.

It was a disappointment that only one of the forum members heard about the trust’s carers strategy and had mentioned that the forum should hold the trust to account on its carers strategy, because in the end it affects not just carers, but ourselves.

After the forum, some members mentioned they were to attend the carers support group that evening to discuss their own personal caring situations. This concludes the update for the Lewisham MH Carers forum for September

Lewisham BME MH Carer/SU Forum September Update 2018

965946_fa217b70Here is the September update from the Lewisham BME carer/SU forum. This is one of the only carer forum, which Focuses on carers from the Black Minority Ethic Community, mainly Afro Carribean, but not strictly.

For this update we were fortunate to have the Lewisham HR lead for mental health staff attend and brief the forum. As a forum we did not know how much the HR lead has to do, which is quite a lot!! The fun runs from the Family Health Isis centre over in Lee.

You are thankful for having the public and patient lead for Lewisham and Croydon link the HR lead with the forum, although I did feel a little sorry for the HR lead being thrown a lot of questions, but she did mention she was glad she came to hear first hand what Service Users and carers had on their mind.

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As a forum, questions were raised on the following.

1. What is HR doing to promote more BME staff to higher positions at SLaM
2. How are HR tackling disciplinary issues among BME staff.
3. How is SLaM reducing the need for Agency staff.
4. Why isnt carer awareness/engagement training manditory on wards and in the community.
5. What carer training is provided anyway?
6. What is the latest updates regarding interview panel involvement.
7. Do BME mental health staff less sympathetic to BME service users?

The forum was quite excited to hear that more BME staff were promoted within the Lewisham area and as a form we hope to engage with such staff.

We also have a discussion on how the SLaM board could try and engage with community groups. Plus I updated the Forum on the recent SLaM family and carers listening event. We are looking forward to see if a carer support group can be set up at Ladywell unit, the forum was wondering why newer carers are having trouble being referred to community groups.

The BME carer/SU Forum looks forward to Lewisham’s Police Mental Health lead and also the SLaM place of Safety staff, along with one of the MPs for Lewisham attending the October forum.

Southwark MH Carers Forum September 2018

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Welcome to the September update of the Southwark mental health carers forum. Out of all the mental health carers forums, this forum was the last carers forum to be set up throughout South London. The forum is held over at Southwark carers.

Southwark Carers provides information, advice and support to carers across the borough of Southwark, they also aim to raise awareness of the rights and needs of carers. One of the aims of the Southwark mental health carers forum is to raise awareness of mental health carers. That being families and carers who care for someone close suffering mental health needs.

The forum also looks to educate carers on mental health services, by bringing in guest speakers. Raised discussions on what is happening to carers in the borough of Southwark, empower carers by forming links and networks. In fact in the September forum we agreed to form a network with a new advisory group.

We were lucky to have Alice Glover the public and patient involvement lead for a local mental health trust. She covers Lambeth and Southwark and also runs the new Advisory groups in those boroughs.

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The local Trust is South London and Maudsley, which has been very good engaging with the mental health carer forums. And thus spoke about the importance of involving carers in regards to the Mental Health Trust services, especially when it comes to how the services are affecting carers and how the services are run.

We heard from Alice the good news in which one our members is also on the new Southwark Advisory group, which started the day before. We are hoping for feedback in regards to what do new advisory group focuses on. This new advisory group Focuses heavily on the services run by South London and Maudsley, but the members of this group advises how services are affecting those in the borough of Southwark.

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The advice group consists of both service users and carers, with mental health professionals working within the NHS trust. The carer forum has a lot of work to do and we are looking forward to hearing updates on the following.

1. More engagement regarding the mental health trusts carers strategy.
2. Engagement from Southwark CCG
3. Engagement from the local MPs.
4. Involvement and engagement from the trust modern matrons, specifically on carer peer support projects.
5. Updates from King’s College Hospital, guys and St Thomas’s in regards to physical and mental health improvement.

You also look too promote the forum and get more members attending, this will be a big job, but it is a skill worth having as I am aware many carers still do not know enough about the Mental of services let alone knowing if they are even a carer.

At the end of the forum, I presented the Final report on the recent SLaM’s carers Listening event held over at the Coin Street Community Centre. I presented on the following, which took place at the event.

1. The carers stories shared at the event.
2. Presentation from Brimingham & Souilhil on their Planning for the future and emergency planning for carers.
3. The workshops on confidentiality, care act and how staff should engage with carers.
4. The panel at the end of the event.

We are very grateful to have Alice Glover it in and here are views at the Southwark mental health carers forum.

Lambeth MH Carers Forum update September 2018

20140710_143445Welcome to the latest update from the lambeth mental health carers forum. The Lambeth mental health carers forum seeks to engage and involve carers who provide care and support to those with mental health needs. When I say mental health carers I am talking about those who are unpaid, I am not talking about care workers.

The Lambeth mental health carers forum has been going for a while now, so we are beginning to find dedicated members who attend the forum each month. The speaker for the month of September was Dennis O’Rouke from Lambeth CCG. It is important that carers have a special interest in organisations especially commissioners who fund the health services. For the funding of Health Services certainly does affect those who use those health services, if funding does not go to a particular service then this could lead to an impact on the service user and carer.

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There are of course many other reasons why carer and service user should try to engage with commissioning, plus commissioners should also seek to involve and engage with families and carers and also the community.

Members of the forum are very grateful for the presentation Dennis brought along. Denis spoke about ” How support for people with mental health needs in Lambeth is changing”.

Dennis spoke about the following subjects:-

1. What we want to achieve in Lambeth
2. What is the living Well network Alliance?
3. Building on what is working well
4. What has been achieved so far
5. The living Well centre approach.
6. How will the integrated front door work
7. How well do focused support work
8. Approach to the crisis changing
9. How do carers want to be involved?

Also included in the presentation was a breakdown of how many millions was spent on Hospital, GP surgeries, mental health services and projects in the community.

Lambeth CCG

There was plenty of informed and interesting questions coming from the forum, the members who attended sadly picked up a bit of knowledge from Lambeth CCG. I encourage members to try and attend some of the events Lambeth CCG and the network alliance hold every now and then.

At the September carers forum, we discussed and brainstormed how to tackle a situation regarding mental health staff being kept in service.

I also updated the forum with the other forms I’m involved in in the boroughs of Lewisham and Southwark. I also updated the Lambeth forum on the BME mental health carers forum I hold over in Lewisham.

Parts of the forum we discussed south London and Maudsley’s carer strategy. We also look forward to form in Links with the new Lambeth advisory group which has been set up by our local mental health trust.

World Suicide Prevention Day 2018

wspd_candleWelcome everyone, This blog post is about World Suicide Prevention day.

World Suicide Prevention Day is held each year on 10 September. It’s an annual awareness raising event organised by International Association for Suicide Prevention (IASP) and the World Health Organisation (WHO).

World Suicide Prevention Day gives organizations, government agencies and individuals a chance to promote awareness about suicide, mental illnesses associated with suicide.

If you would like to see the video version of this blog post, please click on the video below.

This year the theme for World Suicide Prevention Day is “Working Together to Prevent Suicide.”

Although it is difficult news to share, More than 800,000 people take their lives each year across the world. In the UK, more than 6,000 people die by suicide a year.

  • Feeling hopelessness and that there is no point
  • Consumed by negative thoughts
  • Feeling unwanted by others
  • Thinking or feeling that you have no other choice
  • Assuming everyone would be better off without you

Suicide or those suffering from illnesses that can lead to suicide can affect more than the victim or person themselves. A death of a loved one can affect the family, friend or their carer. Unpaid carers can play an important role in providing support for someone suffering suicide thoughts.

What to do if you are suffering from suicide thoughts

  • Speak to some close you can trust.
  • Contact the Samaritans on freephone 116 123.
  • Contact your GP.
  • Call NHS 111 (England).
  • Contact your local crisis team.

What can you or others do to help raise awareness?

  • Raise awareness that suicide is preventable.
  • Improve education about suicide.
  • Spread information about suicide awareness.
  • Decrease stigmatization regarding suicide.

 

Promoting your voice as a carer

insert_edited-1Hello, welcome to my latest blog. This particular blog is aimed at carers. This post hopes to be an inspirational message for anyone who is caring for a family friend or even a neighbour.

This post looks at promoting your voice as a carer. As a carer by our role, we give up so much and sometimes expect little, by definition health services and sometimes social services are aimed at the patient. Policies and laws can often assume that the family and carer are strong enough to cope by themselves.

Still, think about all the hard work energy and love you provide in caring for your loved one. No one else can tell you how to do your job, although they can provide some insight and maybe some support. So it is quite important that you use your voice as a carer to let others know how important you are in regards to services and policies.

Its all about Carer’s Voices

The risk is far too great if a carer does not speak out. Not only is the patient’s life or quality of life is at risk, but also the carer can suffer declining quality of life. When carers get desperate, they begin to risk so much and sacrifice so much such as time and energy. It is vital that you as a carer speak up, network and engage.

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

I am not only just asking you to speak up because your welfare depends on it. I am asking you to promote your voice because you should be valued as a carer. Just because you are a carer, does not mean that you should be ashamed to be a carer. Carers should be championed and valued for the things that they do for the family. If the community can learn from carers then we have a caring community.

Considering carers are unpaid, this is the least that carers can deserve. We should be encouraged to promote our voices, be it at events, forums, carer support groups, meetings and consultations. Carers should try to get out there and make a difference. Remember no one can tell you how to do your role, however they can advise.

Your caring experience is your own

Just as no one can fully tell you what to do, no one can fully understand what you are going through. No one can wear your shoes as you walk that difficult path in support in your loved ones journey through the health system. The emotional and physical turmoil a carer can go through cannot be fully understood, so it is vitally important that as a carer you speak out and get your voice promoted.

Sometimes as a carer we can be impatient and want change to happen straight away, but we must be practical considering the harsh changes is going through the NHS and social welfare system. Constant turnover of NHS staff can listen resources and support for carers. We need to realise that Rome was not built in a day. As carers we seek engagement, involvement and empowerment. Most carers will try their hardest not to harass and hassle those responsible for services, but unfortunately at the same time we do not want things to drag on and carers welfare is not Limitless.

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What services need to try and do regarding carers

I will make this as brief as possible, i’ll make this as gentle as possible. As carers, we want services to celebrate us. We do not want services to be scared of hearing carers voices. We want services to involve a so much that it seems like we are part of the team. Services should try to seek carers views. Services should try to engage with carers and invite them to service provision changes.

As carers we do not want services to keep referring carers on, we do not want services to keep passing the buck. We do not want services to be embarrassed of carers or afraid of carers.

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Due to these difficult times, as carers we must recognise that caring is just not enough. We must push our voices for more care support and work with those to get more better or creative services that help in the Caring role.

Learning from each other

As a carer please be interested in what the NHS is doing for you and the person you care for. Do not assume that the NHS is the expert in family and community care. We must all work together to enhance health and wellbeing in the family and in the community and eventually in Society.

Remember as a carer you deserve to be valued and championed, it is all about community and bringing out the best in ourselves. So think about using your voice as a carer to get your voice promoted.

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