Monthly Archives: November 2019

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

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

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

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

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Your right to be heard

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

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

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Your right to view information

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

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

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

Your right to be involved as a carer

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

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

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

Your right to be Identified

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

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

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

Your right to a carers assessment

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

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

Your right to employment as a carer

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

Your right to complain.

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

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

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

Your right to some financial support.

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

Your right to counselling and therapy.

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

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

Your right to network with other carers.

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

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

  • Weak brought together makes strong!

Your right to hear about your carers rights.

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

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

Your right to be involved in services at ALL levels.

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

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

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

Your right to a health check up.

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

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

Your right for care planning for yourself.

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

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

PDF Pack below.

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

Your right for education and skills training.

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

Your right to be referred.

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

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

Conclusion

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

You deserve it.

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

Conclusion

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

HSJ Award Ceremony 2019

HSJWelcome and thanks for stopping by. This website aims to raise awareness of unpaid carers, like myself and also raise awareness of mental health. Hence the title of the site “A Caring Mind”. Recently I attended the exciting and prestigious HSJ award ceremony. I wanted to blog a fair bit of my experience there, especially from a carer’s perspective. Before I continue with my view of the ceremony, which was excellent, I want to mention a bit about HSJ Awards and its aim.

A bit of background on HSJ Awards

The HSJ Awards have been celebrating healthcare excellence for 39 years through huge political, technological and financial challenges within the sector. They have many partners, which are The Department of Health & Social carer, their leading partner Geometric Results INC, Lloyds Pharmacy, NHS Employers, Ministry of Defense, NHS England, Freedom to Speak up, NHS Charities together and many more.

Sorry I forgot to mention HSJ stands for Health Service Journal. The Health Service Journal is a news service which covers the National Health Service, healthcare management and health care policy. So you can tell what HSJ covers in regards to health is of major importance.

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The HSJ awards focused on several categories on that night to celebrate the hard work, innovation and dedication across the Health and Social care field.

The categories up for awards I have listed below.

Acute or Specialist Service Redesign Initiative Award
Acute or Specialist Trust of the Year
Acute Sector Innovation of the Year
Clinical Leader of the Year
Community or Primary Care Service Redesign
Connecting Services and Information Award
Driving Efficiency Through Technology Award
Freedom to Speak Up Organisation of the Year
Health and Local Government Partnership Award
HSJ Partnership of the Year
Mental Health Innovation of the Year
Mental Health Provider of the Year
Military and Civilian Health Partnership Award
Patient Safety Award
Primary Care Innovation of the Year
Reservist Support Initiative Award
Staff Engagement Award
System Leadership Initiative of the Year
System Led Support for Carers Award
Workforce Initiative of the Year

As you can tell, from the categories the awards reflected excellence on health services across the country.

My experience at the HSJ ceremony

The HSJ 2019 award ceremony took place at Evolution London, which was once known as Battersea Evolution. The building is massive and has seating up to 2,000 for dinners, I think i does hundreds of ceremonies a year as in conferences, exhibitions, award ceremonies and much more.

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You can find out more about the venue below.

https://batterseaevolution.co.uk/about/

If I was to sum up the ceremony, I felt most welcomed by everyone from experience of care team from NHS England, Carers UK and Carers Trust. They were all so important in the role that they do, even though they probably would be very humble about it. I felt honored to be there.

The food was excellent, the venue staff was very polite and the HSJ team especially Zara was fantastic. I was shocked they managed to get hold of actor James Nesbitt OBE to host the ceremony and I did not expect him to come out singing, James was very professional throughout the ceremony, because there was so many award categories to go through.

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I was also impressed he wore the #NHSThinkCarer band and actually spoke about it at the ceremony.

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Whats it means to a carer when a region wins that award

Going back to the HSJ Awards, I was fortunate enough to be one of the Judges for the Award category on “System Led Support for Carers Award”. I must admit judging the awards was fun, but challenging since the entries were very good, but to be honest my main drive for this blog is what does it mean for carer when a service wins such an award?

I did not really want to just do a description of the award event, I think anyone reading this especially healthcare providers should be interested on my thoughts. I think I wasn’t brought in to judge the entries because I am just a carer, I spend a lot of time engaging with mental health trusts, councils and CCG’s on carer welfare, policies and practices. I am sure some of them are fed up of me poking my nose into their business. Yet my focus is always on the unpaid carers where I am practically covering South London and expanding quickly.

If you look at my website you can see I have been raising awareness from 2014, but even before then I was involved raising awareness of unpaid carers. Its like I have nothing better to do but network carers together and speak as one.

My view on the system led support for Carers award is that it is a challenge to other systems to engages with unpaid carers. Any part of England’s health and social care field focusing on carers should not be a tick-box exercise.

I want to remind unpaid carers to take time and examine why West Yorkshire and Harrogate Health and Care Partnership won that award. You can view the Case study in the link below.

https://www.hsj.co.uk/7026205.article

As a carer and an HSJ carer judge, I could not help but compare the entries to local or nearby carer focused systems. I had learnt a large amount of what works for carers and why.

I want to raise this to other unpaid carers that I network with as so to help educate unpaid them of the importance of awarding systems that involve and focus on unpaid carers to the highest standard.

My view is that West Yorkshire and Harrogate Health and Care Partnership has thrown down the gauntlet for others to either follow or compete against, but it is not enough for local authorities to do this by following examples from winners. We need unpaid carers to also engage with local authorities and ask…what are you doing for us?

We need unpaid carers to be green with envy when they see how other unpaid carers are supported from HSJ winners and those that entered for that category. It might seem hard asking for carers to poke their noses into Local authority affairs, but why not?

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Does the Local authority seek to involve carers into their systems? Why are some Integrated care systems so quiet? What are they doing and who is leading them? How are carers identified in your area? Are you involved when it comes to Carer engagement? I think carers should find out who or what is running their carers programme and if it is either run of the mill or seeking to make an impact in unpaid carers lives.

The future

I want to see more entries in 2020 HSJ Awards for the carer category, just because pushing for unpaid carer welfare can be challenging, does not mean no one can do it.

I am sure some where out there, there is a region in England that has been quiet on carer engagement for too long and should not be hiding. I think those that entered for the award were all winners in my book and set the standard for others to follow.

Conclusion

I would like to thank everyone who has involved me so far and from my observation they all have unpaid carers at the heart of what they do. If the NHS was to fall over (god forbid), they still would be fighting hard for unpaid carer recognition.

Thanks for stopping by and I hope I have not offended anyone apart from councils or districts who stay quiet on carers.

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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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