Tag Archives: mental health

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.

 

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

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

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

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

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

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

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

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

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

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

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

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

We Coproduce forum update – November 2019

Welcome back to another forum update, although this is not one of the carer forums I do, but a forum i usually try and attend over in West London. Yes, it might seem a bit of a trip to travel from south East London to West London, but I have been attending the West London Collaborative forum for some time now.

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So why do I go all the way over there? To be honest, I am always interested in how mental health trusts engage with their communities, plus I am interested in how communities engage with the mental health services and commissioners. It helps if the community is very inviting and friendly and out of all the areas that have been welcoming and have a strong mental health presence seems to be West London community. The culture is different in regards to giving people a voice, but networking and finding strength in others is celebrated as many in society seem to find weaknesses in service users and those who support them.

A bit more about the WLC or known as “We Co-produce”.

Taken from their site “We Coproduce CIC” is an award winning social consultancy, owned and run by local people for people who care about the future of health care in the UK. They are commissioned to work with local communities to coproduce better and find braver solutions to health and social care challenges.

You can find more about them off their site https://www.wecoproduce.com/

The forum

The WLC forum took place at St Andrews Church on a cold Tuesday morning, the forums run once a month to cover the boroughs of Hounslow, Ealing and Hammersmith.

These are the borough West London NHS Trust covers, although the Mental Health trust covers a lot more areas including the famous Broadmoor hospital.

You can find out more on the West London MH Trust from the link below.

https://www.westlondon.nhs.uk/

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Who Presented the forum for that day

Usually when I attend, its Jane McGrath who facilitates the forum and has been doing so for a number of years. She is the CEO of “We Coproduce CIC”. Jane who has used the services of West London MH Trust places a strong emphasis on co-production and feels their should be an equal partnership being Patients, carers and health professionals.

Jane has a very high profile campaign, promoting and working towards the mental health of the community, although to my surprise Jane was away and we had two service user facilitators presenting the forum, which impressed me.

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Who Attended

The reason why I was impressed is that the running a forum can be very challenging at times, you just do not know how things will run for time, or who will kick off (this is more of a polite way of mental health discussions sometimes becoming emotional). I was not going to do much at the forum, but when I saw how well and professional the 2 new facilitators were doing, I had to blog the forum off the fly.

In attendance at the forum where many patients, some carers including myself, the West London NHS Recovery college lead and also peer trainer. We also had in attendance Deputy Director of Nursing who leads on the Triangle of Care at the trust, the WLMHT Chaplin and also Representatives from the Local Mind centre as well as Trainee Clinical Psychologist. So you can see the facilitators had their work cut out. Sometimes I even see Carolyn Regan who is the CEO of West London MH Trust attend the forum, she often is smiling and very approachable.

The Agenda

On the agenda for the November forum was the discussion on how the Critical Voices Conference went. The conference was a 2 day event over in Ireland from the Critical Voices Network. The conference was held at University College Cork, and members of the forum attended and fed back to the attendees.

The conference looks into how psychiatry and psychology affects the community and 2019 theme was on challenging mental health systems: critical perspectives from inside out and outside in. The Keynote speakers of the conference was :-

Alison Faulkner, independent survivor researcher.
Anne O’Donnell, community educator/activist.
Fiona Venner who is the Chief Executive of Leeds Survivor Led Crisis Service.
Fionn Fitzpatrick, community development worker/ activist.
John Cromby who is the Professor of Psychology from University of Leicester.
Robert Whitaker, journalist, author of Anatomy of an Epidemic, founder of http://www.madinamerica.com.

We had a brilliant feedback discussion on what happened at the conference and a lot of talk was on Robert Whitaker’s view on the problem of anti-psychotics and the claim of measuring the chemical imbalances in people.

Robert Whitaker is author writing about medicine, science, and history. He has wrote five books, three of which cover the history or practice of modern psychiatry. The forum discussed the view on how psycho-therapy has been reduced as the medical model have taken over and the relationship between professional and patient has deteriorated.

Sally Gomme of the Wellbeing Network explained the issues with the Diagnostic and Statistical Manual of Mental Disorders and how so much emphassis was put on labelling mental health disorders and distancing people. It was not to say that medication does not work for everyone, after all we are all individuals, but the claim of measuring imbalances was to be challenged when it comes to mental health.

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The discussion went both ways as some service users felt medication worked for them and and even though the side affects were horrible, at least it gave some hope. While others felt the medication can be a mis-use of treatment. Clinical professionals felt their aim was to help people recover, but did admit more work need to be done on therapy and access to therapy.

What quotes stood out in representing mental health activism.

The Critical voices conferences was a 2 day event, so there was plenty of workshops, presentations and sessions in which WLC members attended. If you want to see how big the conference was, please see the link below.

https://www.ucc.ie/en/media/academic/nursing/2019images/newsimages19/newsdocuments/13and14november2019conferenceprogrammeoverview.pdf

The forum attendees was set a workshop on quotes describing the importance of critical voices.

 

Famous quotes were shown from Franz Fannon, Henry Girdux, Angelia Davis, Antonio Gramsei and more. I chatted with forum Co-Facilitator Hannah Mcdonald (A Nurse who is the Royal College of Nursing mental health activist).about the quotes and as a group all fed back as a group on what quotes stood out for us.

 

 

Trainee Clinical Psychologist research presentation

I often observe how psychology and psychiatry engages with the community as all fields including psychiatry and psychology continue to develop and should be researched. We were lucky to have a Trainee Clinical Psychologist updating the forum on her research. So it was not always about Service user voice or the carer voice, but what we can learn together from the Clinical perspective.

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Charlotte Martan the trainee clinical psychologist feed back the results of her research called “Implementation of a Service User and Carer feedback”. She talked to the group about Crisis Teams and getting feedback from those admitted to the Crisis house.

The outline of the project was

  • Rationale

How NHS England felt that listening to people who use or care about the NHS can help understand people’s health needs better.

  • Research Questions

The research looked at
1. Are patients and carers willing to provide feedback about their experience of the service following discharge?
2. How do service users and carers who access care from ECATT experience the service
3. What recommendations for improving service delivery and quality are offered by service users and carers?
4. Is it feasible to implement a feedback system in a crisis team setting?

  • Methodology

Using existing literature to draft service evaluation questions
present draft to staff in team meetings
Attend groups to get feedback

  • Feedback from Service Users

Where the WLC forum was updated on SU feedback

  • Feedback from carers

The WLC forum was updated on carer feedback. One thing that stood out was that the Mental Health trust’s patient database was not constantly updated with carer information, so it was hard for the researcher to find carers to get feedback. One of the attendees felt that the triangle of Care framework will counter this and will seek to improve carer identification and auditing.

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  • Recommendation for implementing a feedback system
  • Recommendation for service improvement
  • Comments and suggestions

Overall feedback from service users and carers was positive about the service, although there were some areas of dis-satisfaction, especially on some service provision and lack of consistency in care.

Summing up forum

I would like to thank the facilitators who were kind and were happy for me to help promote the forum for the day. I certainly enjoyed some of the food the forum offered attendees, plus one of the patients brought showed some of his art, which fell out from the notes he was taking. I just had to take a photo in which he was pleased to show his work and he even offered to sketch a picture of myself, but that is for next time.

 

 

My view is that all mental health trusts and communities have a different style of engagement, one way of engagement might not work in another area of the community, however when I travel to a part of London where there are no Service User/Carer forums and the voices are silent, I begin to get suspicious as one quote stuck out during this forum.

There’s really no such thing as the ‘Voiceless’. there are only the deliberately silenced, or the preferably unheard.”

Thank you for stopping by.

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.