Welcome to another blog post by carer Matthew Mckenzie. For this blog post I want to express my views on involvement as a governor. As you might already know by now, I govern a large NHS mental health trust, that being SLaM or South London & Maudsley.
Welcome to another blog post by Matthew Mckenzie a carer for someone surviving mental health problems. I thought I would write this blog post on mental health carers who can sometimes be ignored by the system designed to recognize and support them.
I thought this time I would do a post on an healthwatch event. Now I have done some posts about healthwatch before, sometimes Healthwatch Lewisham and other times Lambeth, but this time I was over in the London borough of Southwark for the Healthwatch Southwark event – One Year on.
Before I continue on how the event went, what is healthwatch Southwark all about? Well basically taken from their site – Healthwatch gives people a POWERFUL voice locally and nationally on matters concerning health services. At a local level, local Healthwatch will work to help local people get the best out of their local health and social care services. Whether it’s improving them today or helping to shape them for tomorrow.
Now there are healthwatches across different boroughs of London and the UK, all giving people the chance to form an opinion of the health services. Healthwatch does more than just listen and engage, they also do enter and view of health services and produce many reports. So the thing is what has Healthwatch Southwark been up to over the year they have been in action?
Well on the 22nd of November, I took a trip over to Pembroke House over in Southwark and was greeted friendly by the healthwatch staff and a staff member of “Community Action Southwark”. As a reminder, the Healthwatches are heavily volunteer focused and depend on involvement by the community, especially by those who have a passion for improving or championing the health service in the UK.
When I entered the premises, I was glad to see quite a few stalls on display, although one of my main interest was the stall about mental health awareness and engagement. I took the opportunity to visit the CoolTan Wellbeing stall. CoolTan Arts exists to inspire and transform peoples lives though creativity and self-advocacy. The stall advertised the up and coming CoolTan Coolwalks, which I have been on several times. The stall also had booklets and information about mental health and a video about different periods the coolwalks focused on.
The next stall I visited was a stall promoting sexual health research and awareness, which is one of Southwark Healthwatch’s main area on raising awareness about sexual Health. I spoke to the stall holder about her research and its main aim is to have people from the area of Lambeth & Southwark from aged 16-30 be part of an innovative sexual health study, where people can look to getting a sexual health check and tell them what they think about the service. Getting tested on sexual health is very important for many reasons.
Soon I spoke to the stall holders of the Southwark & Lambeth Integrated care where Health and social care organisations and people in Southwark and Lambeth have come together so that local people can lead healthier and happier lives. I was impressed by their display and the stall holders explained some important reasons for building a community along the lines of better healthcare. They want people to at least
– Feel they are a part of the community
– Have systems in place so they can avoid having a crisis at a later stage
– Live independently
– For carers to live the life they want to the best of their ability.
– and lots more
Another stall I visited was the Southwark CCG stall, where they had lots of interesting information on what Southwark Doctors have been doing to improve healthcare for the borough. The CCG stands for Clinical Commissioning Group, which basically means a membership organisation of all the GP surgeries in a borough who help organise the delivery of NHS services. One of the main focus of the CCG is of the commissioning of services hence where should the money be allocated to on providers of health services.
My main interest was the Southwark CCG summary annual report for 2013-14. I also picked up and took away people’s health information is used in the borough of southwark. I urge those interested in their health and health services to read up on such information when they can.
I also noticed stalls doing free health checks, free eye check examinations and I was also given a free health goodie bag. I guess Xmas has come early for me.
After having some tasty lunch, which was provided free of charge by Healthwatch Southwark. We then went upstairs for the main event. The event was to hear what has healthwatch Southwark been up to? It was time to hear their story.
First to speak was Southwark Healthwatch Chair David Cooper. David spoke on the following being how much work and effort HW Southwark has been doing, The new NHS 5 year plan in south london, how financially difficult it has been for the health services and the importance of Healthwatch Southwark.
David then moved on to the agenda of today’s speakers, which I was keen to hear from.
We were then introduced to the new Healthwatch Southwark Manager Aarti Gandesha, now Aarti spoke about more about Healthwatch Southwark’s aims as you can see from the picture. She also talked about how people can get involved with healthwatch and there are many ways to get involved if you are passionate about your health services.
Aarti then talked about what HW Southwark has been up to so far and many of their engagements have been on the community focus groups involving different members of Southwark’s communities. Healthwatch Southwark have also held many public forum events and community events. Plus HW Southwark have been busy collecting stories for their joint ‘1000 lives’ project.
The Healthwatch Manager then moved on to explain what Healthwatch priorities are for Southwark and there are 4 being
1. Access to GP Services
2. Access to Mental Health Services (my main area of interest)
3. Sexual Health Services
4. Social care Services
Next Aarti talked about Healthwatch Southwark’s archievements during the past year where they have
– Engaged with a large number of people over group sessions
– Established 4 priority areas
– have 676 supporters
– received 194 info and signposting queries
– and more
After Aarti’s presentation and talk, we then got to hear a story from a carer in the borough of Southwark. The story resonated similar themes that I go through as a carer e.g. the worry of services being closed down, being able to relate to others, the hope that things will get better and having to provide advice for others.
We then got to hear a talk and presentation from Southwark CCG Director Paul Jenkins. Now Paul’s talk was on the current & Future Opportunities for locality and neighbourhood working. Paul talked about understanding Southwark’s population and health needs (shown as a tree in picture).
Plus Paul talked about the direction of travel when people needed to access health services in Southwark. The aim was to look into providing GP practices that will work closer together in the borough, plus providing a wider range of hospital care closer to patients homes. The thing I noticed from Paul’s talk is that services will need to work together since there will be many challenges.
We were shown the different neighbourhood groups of practices and their reach into the community. Plus the explanation of the direction of travel where many schemes and projects will be set with the aim of GPs working together
The last speaker was Kerry Crichlow who is Southwark Councils director of strategy and commissioning. Her talk was about health and social care commissioning and the integration in the borough of Southwark.
Kerry gave a quick run down on the big issues about commissioning. Those being an ageing population and responding to financial challenges, plus health inequalities. Next Kerry moved onto opportunities where a strategy developed to aid the patient’s journey through their experiences in health. Plus building a stronger framework on prevention and inclusion. Kerry spoke more about the opportunities to shape provisioning around people and maximising integration of health services.
After the presentations, the public and patients who attended got to ask some quick questions, I won’t go into the answers, but some questions were based on
What can be of assistance for those who have physical disabilities or those who have hearing impairment?
What can bridge the divide in health equalities in the borough of Southwark?
How can personalisation help those who have had bad experiences health assessment?
The next and last stage of the event was people to seperate into groups and provide HW Southwark and their facilitators opinions on the following
1 – Service Changes
2 – HW Priorities
3 – Involvement in HW Southwark
The one I chose was the “Involvement” table on how can Healthwatch get more people to volunteer. Each person on our table talked about their role and connections and we also talked about who do each of us talk to when we experience good or bad things in health service. Usually it would be our friends, family or specific groups. For me I tend to speak about my experiences at a carer’s group.
We also discussed the importance of social media, which is one of my area of expertise and also the purpose of volunteering since some would like to volunteer, but are not sure how much work it would involve.
After feedback from each table. David then thanked all for attending. I was particularly glad I attended the event and was allowed to even blog the event. What I got most off this event is learning more about Southwark’s Health and social care setting, learning even more about Healthwatch, networking as I got access to sit on more groups and also giving my opinions.
Thanks for reading my blog post of this event.
Welcome to another of my blog posts. Did you know that caring for someone can come with some difficulties? There are many difficulties in providing care, but one of those difficulties is stress. Did you also know that the date of this blog post is written on National Stress Awareness day 2014?
National Stress Awareness day 2014 is promoted by many organisations, but the one that initially pushes the awareness campaign is The International Stress Management Association which is a registered charity dedicated to Promoting Wellbeing and Performance.
Well hopefully you have managed to attend some events about stress awareness or perhaps you have read up on what stress can do to people, especially workers or carers. However what exactly is stress?
Basically our thought processes control our body and this can be done at such speed, that our body quickly reacts to our thoughts. The thing is Stress happens when we feel that we can’t cope with pressure and this pressure comes in many shapes and forms, and triggers physiological responses. What are these things called pressure? How can pressure affect how much stress a person can take?
Embed from Getty ImagesPressures come in many form, basically the idea that we should set out to achieve a specific task or number of tasks, but what happens if those tasks become increasingly difficult to do?
Let me go back to the world of carers, many carers find out they have to set themselves a task to provide care with almost next to no support. Of course this is depending on what care is expected from a carer, but unfortunately the tougher the aliment of the caree (person receiving care) then the tougher the caring role.
Embed from Getty ImagesIf the task of caring seems never ending or other tasks get in the way, then the pressure increases, if a specific carer cannot cope with the pressure, then stress increases, if the carer cannot find a way to cope with the stress or no support is available to cope with the stress then the carer can suffer many difficult symptoms.
What are the symptoms of stress?
Stress can affect people differently and this can also boil down to the level of stress. Below is a small list of how stress can affect some people.
Inability to concentrate – If a person worries all the time due to stress, they can find it hard to concentrate.
Seeing only the negative – Stress can cause people to lack confidence, especially if they fail at a task. Many carers often blame themselves when faced with the difficult task of providing care.
Anxious thoughts – One of the most common symptoms of stress, we become so anxious that we cannot decide what task to achieve.
Constant worrying – Some stress can become a roundabout, we want to rid of stress, but worry about stress and eventually it can lead to worrying about worrying about stress.
Moodiness – Some people can become short tempered of moody if feeling stress.
Agitation, inability to relax – Since the body may be in ‘fight or flight’ mode, it can be very difficult to sit still.
Feeling overwhelmed – Another common symptom of stress, especially if a carer is multi-tasking, a carer would feel overwhelmed
Depression or general unhappiness – One of the most common psychological traits that can unhappiness
Aches and pains – constant stress can lead to physical problems
Chest pain, rapid heartbeat – Stress can also affect people physically.
Loss of sex drive – Things that people enjoy can also be affected, too much stress can stop us relaxing or having an interest in many things.
Frequent colds – One of the most common symptoms of stress, which affects workforce heavily, constant stress can affect our immune system, where it becomes harder to fight off infections.
Trouble Sleeping – Stress can keep the body in flight or fight mode that it can be difficult to sleep due to constant worrying.
So can you imagine some of the situations a carer may find themselves in if they take on too much within their role. It might not be so bad for carers coming from larger families, since a another member of the family might take over, but if a carer is on their own then the stress can affect a carer till they feel they can no longer carer any more. Plus coming back to larger families, I have heard some families leave a single member caring for someone because the family refuses to get involved.
Embed from Getty ImagesWell what can be done about this? What should a carer seek to do?
The first thing would be to understand when stress can become a problem for themselves. Here is a video I have made to explain more about National Stress Awareness day.
Other things a carer can try to get done is get a carers assessment, especially in the UK a carer can get assessed to see if their caring duties are are risk of overwhelming the carer.
The next task is for carers to try get themselves respite or a break away from the stress of caring, usually the assessment can indicate when respites are needed, a break might not solve the problems of caring but it at least it is a start.
The video I listed above can also be an educating factor for carers experiencing stress, there are steps where carers can look out for the signs of stress. The best steps are the following
– Take time out to do the things you enjoy
– Watch carefully for how you breathe, try slow down breathing during stressful situations
– Exercise whenever you can get the time
– Connect with friends, family or even other carers
– Try to stay positive.
Stress is such a huge problem for society, no wonder there are awareness days dedicated to stress problems. Stress also is a major problem for the workplace especially the NHS and organisations need to take notice to protect their staff. Even if the stress awareness opportunity was missed, let it not be a one time event, but a nudge to implement stress awareness into policies and protect staff.
Welcome to another one of my blog posts, on this particular post I want to talk about carers. Those who have regularly visited my blog might have some idea what a carer already is, but for those who are new to my blog may wonder “what actually is a carer?” What defines a carer and why do people, families and communities sometimes feel compelled to care?
What is a carer
Someone who looks after another persons needs
Lets say you have known someone most of your life or perhaps someone in your family who has fallen ill. That person tries to do their chores and live their life without much help or support, but after a while it will be noticed by most people that they are struggling.
This is when a person decides to take on some of the responsibilities of that person that has become ill, although the carer’s main focus is to provide help, some security and care for that person.
Not all carers are the same and some have demanding caring duties, while others care on and off for a short time, but no matter what the tasks, they are all carers.
They are mostly not professional carers
When I talk about carers, I am not talking carers who train up on a course and look for people to care for. I am talking about those who find out that care is directed at them due to a family member falling ill, or a neighbour or a friend in desperate caring need. I am talking about parents looking after their children who have sustained serious injuries, disabilities or impairment. I am talking about young carers who are not only trying to understand their place in the world, but also trying to understand why their parents are in need of assistance.
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Its not that carers can’t walk away from the care they give, some carers have to make that decision on what they should sacrifice. Carers may have to give up work, education, time and commitments to provide care.
Carers are known as carers because they ARE standing by their loved one. If someone moves on they can still provide some care, but it might not be as demanding as those who are currently providing long term or full time care.
Carers have to juggle many things as if their own life is slightly put on hold while they seek to understand the illness that is affecting who they care for. This is more difficult if the illness happens to be a mental illness or perhaps a devastating physical problem.
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Some carers might not have a clue on what they may face and will have to look for answers or support, but we ll get on to that later.
Types of carers
I am not going to make a long list, but I will want to try define at least some of the types of carers. There are always a long list of carers you can search for on the internet, but since all carers are not the same, it makes sense to point out different types of carers.
Carers for elderly
Here we have those who will end up looking after their parents, most do this because they are concerned or worried that their loved ones will end up in a home too far away from them. Quite a lot of older people prefer to stay at home for their own independence, while others fear abuse and neglect.
Some people may wish for their parents to move on, but carers may prefer old aged parents to stay at home. You can also have older aged carers who care for their partners who are ageing. Other older aged carers also may care even for younger people.
Below is a list of symptoms carers may have to care for when looking after older aged loved ones.
List of symptoms these types of carers provide care for
Heart conditions
Dementia, including Alzheimer’s disease
Depression
Incontinence
Arthritis
Osteoporosis
Diabetes
Breathing problems
Frequent falls, which can lead to fractures
Parkinson’s disease
Cancer
Carers for the disabled
These type of carers can be of any age, but this time care can be demanding depending on the disability the caree has, when I mean caree, I am talking about the person receiving the care.
Types of disabilities a carer will have to care for.
Attention-Deficit / Hyperactivity Disorder (ADHD)
Autism
Cerebral Palsy
Hearing Loss
Haemophilia
Intellectual Disability
Paralysis
Sickle Cell Disease
Spinal Cord Injury
Tourette Syndrome
Traumatic Brain Injury
Vision Impairment
This is not a full list, but shows what carers may need to tackle in order to provide care. I have two brothers who have Autism and providing care and safety as well as treating them with dignity can be a juggling act, but be aware Autism is a range or spectrum of disabilities.
There are also different ranges of paralysis putting strain on carers wanting to care for those who lack the function to care for themselves.
Carers for mentally ill
Another type of carer who often can be hit pretty hard because they can lack the knowledge of how to deal with mental illness that has struck their loved one. How can you care for someone who may not wish to receive care and yet is recognised by the mental health system as user of the services. What happens if the caree does not wish to engage with services? Where does this leave the carer, what rights do they have?
Embed from Getty ImagesHere is a list of mental health difficulties in order to understand what some carers provide care for.
Addictions
Bipolar
Obsessive-compulsive disorder (OCD)
Body Disorder
Post-traumatic stress disorder (PTSD)
Personality disorders
Eating disorders
Psychotic disorders
Mood disorders
Anxiety disorders
Stress response syndromes
Dissociative disorders
Factitious disorders
Sexual and gender disorders
Somatic symptom disorders
Tic disorders
Remember this is not a full list.
Some disorders can vary in the type of care needed, while other disorders are devastating and require support not only for the patient or person with lived experience, but also for the carer who can at times be overwhelmed in providing care.
Youngs Carers
One of the most difficult experiences for a carer is that of a young carer. Young carers can lack decisions on if to provide care or how to cope. Young carers face carer stigma and bullying from other young people who may find it funny that the person is caring for someone with disabilities or other illnesses.
The strain on young carers can be so difficult that often family relationships break down, although relationship breakdown is a common theme among many other types of carers.
Young carers especially need help in supporting their relatives and usually this can depend on how good social services are. One strain could be that pressure is put on the caree to have their child put in some form of care, but this can cause added strain to the child who now lacks family support, but could have freedom to enjoy their childhood. The balance of growing up as a young carer is a very fine line.
What MAKES a person a carer
You do not want to see your loved one hurt physically, emotional
A carer is not a sudden role, usually a carer is formed as a slow process. Since I have been a carer for most of my life, I have come to the conclusion that being a carer is something you become and the role will change.
As a carer you do not wish anyone else to take over your role due to fear that role will not be carried out, but this does depend on the type of care needed. I am now going into controversial mode. In the UK some of the health systems have failed loved ones, the systems designed to protect communities, families and those who fall ill have ended up as part of the problem due to power culture and lack of information share.
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The elderly, frail, sick or mentally ill have been put at risk time and time again due to lack of resources, lack of finances, mistrust and neglect and lack of…..care.
I am not going out on a limb to blame the NHS as a whole. Since in the UK this is one of the biggest and best placed institutions, which Britain has to be proud for, we have skilled health professionals working overtime to provide care in difficult circumstances and even then we have carers who fail their loved one due to abuse and also neglect.
However we are always asked this question, the question asked of a carer is who do you trust?
The NHS or care system in any country has to be responsible somewhere, too many stories of failure to provide care and families and communities will mistrust the health system, they will then provide their own care. The primary role of a carer is to not see any more harm come to those that they love.
Carers share time and energy in their role to care
Although carers are put under pressure, but carers noticed that they can share their time to provide some care otherwise a carer would more likely step back and walk away.
There is a threshold where a carer will decide to stop if their caring duties become too much, but carers can see time and energy placed in their role. The resources of time, care and energy must be planned in order to stop a carer from being over burdened, this is not an easy thing to get right and it depends again on what the caree is suffering from as present.
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Caring sometimes can be overwhelming, which is why carers need support themselves
No one is a born carer and carers often worry about their own health, be it physical or mental support. Carers who care do not get paid unless its a form of benefit, however caring is almost like a job to most carers, but carers aren’t bankers or engineers, they do not serve the public in that way.
Carers try to keep their families together, families try to keep community together, without the community then what do we have left? That is a frightening thought.
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Carers have to emotionally second guess what their loved ones needs are, carers may also have to advocate on behalf of their loved one, sometimes the law may try to support carers, but at the same time block carers access to information (for a good reason), but this can cause conflict in the caring role.
Carers have to do physical chores, shopping, cooking, hygiene care, financial support and keeping the family together as well as sacrifice their own future.
The problem is caring is not something that can be physically traded, care is provided behind doors, caring is just something that is not often seen, so perhaps society does not value carers as they value material things. Maybe this is a human condition, but this human condition has a flaw, because not all in society will be carers, but one day we will all need care ourselves. Think about that for a second.
Carers can be trapped by outside forces who may not recognise them
Carers can be easily trapped, as I have mentioned before no one is forced to care, since caring can be a decision process. Some people can walk away from care, while for other carers the role has become too much and rightly so.
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Maybe carers just feel they are not getting that support, but each day a carer will question themselves on how much resources do they have left?
Carer Stigma
Some people do not wish to be labelled as carers because they feel they are caring out the role as if they are a family member or doing this out of honour for the community. Others prefer that they are labelled supporter or helper, but no matter what they are called, they are providing care and assistance. Some carers are fortunate to have bigger families who can help take turns in the role, while other carers are litarily a one man army digging deep in vast energy resources.
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Society is only as strong as the people who live within it and test it. Society is just not the be all and end all, society is changing all the time. The problem is society also must remain a state where community wishes to live within it. We all wish for society to be civil, but the problem is so many things are tied to economics and that includes the health system. Its a numbers game, less resources here and someone has to pay the price and the cost is painful.
Society has rules and unfortunately rules can trap carers. Carers can end up paying the price where they are only trying to help their family or the community.
Carers need to speak up, but not all can speak
Carers need to speak up, if carers wish to be valued for what they do, they need to let others know what battle they face almost every day. Some carers cannot easily do this, while others face the stigma of caring.
I have come across some people who feel carers are just lazy people who should get a real job, and some do have a point, there are other carers who abuse their position, but for most of the time a lot of carers are under huge amounts of pressure. Throughout my caring role I have encountered many organisations in the UK speaking up for carers that being CarersUK or Carers Trust and many more.
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We also have engagement and participation groups and healthwatch springs to mind, because they play a greater role on access to quality health care.
Some support
If you are a carer yourself or know someone who is starting out as a carer, you are not alone, there is some help to support you on your journey
Going on line to find resources
Its a tough one, but I have always found going online to look for examples of providing good care. Some will say the internet has too much nonsense to make any good idea of what care should be, but use your judgement, compare different sources. Get numbers and ring around, join forums. CarersUK has a forum which offers support, advice and experience.
As for other countries, there usually is some form of carers forums online. If you do not have access to the internet, usually a library or a carers center has some online facilities for carers to use. Use these facilities to also plan your future, since it is important to work on your skillset, since you might not be a carer forever.
Visiting carer centers
You can always physically get support and that is by booking some time at a carers center. I use carers Lewisham myself and sometimes I pop over to other boroughs in London. At carers center you can get emotional support as counselling, financial advice, advocacy and meet other carers. The rule is do not try to cope by yourself.
Speaking to other carers
As I have mentioned before, speaking to other carers is vital. I can say safely say I have written this blog in one sitting, but I have only 10% of knowledge of what is required of carers. Speaking to other carers has several benefits but the biggest is to show that you are not the only one out there, you are not on your own. Carers can also offer advice on starting out on care, they can also offer some emotional support and advocate if need be. The other side of the coin is you can offer advice to carers who are at their wits end.
Information is your currency to your caring role
People often value currency as in money, carers lack financial capital, but money cannot buy love or care. So the thing is what can buy good love or care?
The answer is Information.
Carers should look online, speak to others and do not be afraid to ask. Get information and turn it into knowledge, then apply the knowledge. We are not perfect and the human condition is frail as is also society is not perfect and can also be put under pressure.
As a carer you will make mistakes, you will judge and be judged. You will get angry, you will be pushed aside and lied to and be undervalued, but deep down you can look yourself in the mirror. Money comes and goes, but memories of those who care will last generations to come.
Good luck in your caring journey.
Embed from Getty ImagesWelcome back to another blog post from a fellow carer. I would like you to check out the following scenario.
Just imaging this. Here we have a patient who talks to the doctor, the doctor sometimes struggles to understand the patient, then the doctor contacts the mental health consultant, the mental health consultant then contacts the care coordinator, the care coordinator contacts the patient, the patient then contacts an advocate and the advocate contacts the doctor, the doctor contacts the social worker who in turn speaks to the care coordinator who then is too busy to contact the patient who in turn does not contact anyone for a long time sinking futher into relapse.
Whats missing from this scenario?
Who is not being contacted or doing the contacting?
Anyone guess?
Thats it!! It is the carer. Each and everyone in that scenario is important and they all have their roles and responsibilities. However When there is a communication break down, which can often happen, when is it time to contact…….the carer?
Chain in the link
Time and time again, us carers who are looking after someone suffering from mental ill health will look to contact those involved in providing a service for the patient or for our loved ones.
There will be times that every so often carers feel shut out because we may not hear from anyone and yet us carers have to pluck up the courage and start raising issues, us carers have to start asking questions, because if we do not care then the ultimate question is who will care?
I am not stating that there is no reason for carers not to be contacted, there are plenty of good reasons and one being patient confidentiality. This goes to say that someone suffering mental ill health may not wish their family or carer to know what they are going through or suffering from. Some reasons are mental health stigma, other reasons are the fear of relationship break down and one of the most important is patient rights.
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We all know there must be a balance to protect the patient, but this also does not mean that confidentiality can be used as an excuse, which it can sometimes be used as an excuse. I am no expert in patient rights or confidentiality, I can only speak as a carer of 11 years. Yet I have seen excuse after excuse as to why I have not been contacted if whoever I am looked after is suffering physical or mental health health difficulties, although at times I can see why information was not devulged to myself.
Us carers walk the fine line between fear, guilt and being isolated or pushed aside. We do not want our loved ones to experience any more pain, but we sit there at times silently waiting and guessing when to act. Us carers wonder when to ask more questions or when to raise concerns. Carers are that vital chain in the link, especially if we are caring for those who struggle to look after themselves.
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Mental Health and the Mortality Gap
It is known that those suffering mental health problems unfortunately have short life expectancies. They lives are about 10 years shorter than those who do not have mental health difficulties. This has become an issue in which the government is trying to tackle, but there is no easy solution.
When you hear of such depressing statistics then many are asking the question why are people suffering mental health problems dying far earlier?
I am not an expert in mental health and I am sure I am missing far more things off the reasons I have pointed out, I guess I can only speak from carer experience and to be honest I am sure this is also the experience of other carers out there wondering how many years are left for those they are caring for. It is an awful question to ponder, but this is usually on the forfront of many carers minds.
Back in 2013, I went to an interesting event held over at the Institute of Psychiatry. The event was called “Mental Health and the mortality gap: what is responsible and who is to act?”.
The event looked at the challenges and solutions surrounding the physical health of mental health service users.
The panel at the event were experts in their field and suited for such an event.
Where we had Professor Shitij Kapur, Deputy Vice-Principal (Health) and Dean of the IoP hosting the event.
On the panel was Dr Fiona Gaughran, Lead Consultant in the Psychosis Service at South London and Maudsley NHS Foundation Trust.
Simon Wylie, Clinical Lead for Southwark Acute.
Dr Ruth Ohslen, Lecturer in mental Health Studies at the Florence Nightingale School of Nursing and Midwifery.
You can listen to the recording of the event below.
http://alumni.kcl.ac.uk/mental-health-event-2013
In fact at around 33 minutes into the recording, you can hear me asking a question to the panel on my fears about the medication issue, which in fact I was absolutely terrified in asking, but ever since that event I am glad I did ask the question and I felt grateful to have been giving the oppertunity to do so.
However for any carer out there who is wrestling with such questions concerning mental health, I do urge them to attend events like the one I mentioned above. Even if as a carer you might not understand much of what is being discussed, at least you can feel that you making your presence felt, perhaps even form a network.
I can only hope that the Institute of Psychiatry or its new name being the Institute of Psychiatry Psychology and Neuroscience hold more events like these in future.
Whose responsible?
Going back to the issue of carers being part of the connection in communication. Us carers have to sometimes ask those difficult questions. I understand that pressure is placed upon the health professionals and there usually is a tug of war on who gets to know what about the patient.
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The issue is even more tricky if deep down in the back of your mind you feel your loved one is lacking capacity to understand their own health risks, particularly if the physical health problems become more chronic.
I understand us carers cannot live someone else’s life for them and we should not smother whoever we care for either, but there is a threshold on when to act before its too late, which can be difficult for those providing the care and agonizing for those who are too late in raising the alarm.
In the end we are all part of the chain in helping to provide care for those suffering mental ill health and yes even the service user has to be proactive. We all have to communicate at certain degrees, that being the doctor, the consultant, mental health advocates and us carers.
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The NHS is under pressure as resources become harder to reach, the outcome is that families and carers will play an even bigger part to fill what is left out of the gap of health service, to try close the mortality gap and finally to form the connection of communication.
In the end we are all responsible.
On the 28th of June, I attended the Lewisham Healthwatch & Save Lewisham Campaign “Winning the Best Community Health Care” Event.
This took place at Lessof Auditorium, Lewisham Hospital. The event was mainly for interested parties, where we had representatives from SaveLewishamHospital Campaign, Lewisham Carers, LeSoCo, Voluntary Action Lewisham, Lewisham’s Health & Wellbeing Board, some of the Lewisham’s Councillor’s, Lewisham’s Young Advisors, Lewisham Disability Coalition and many more.
As you can tell from the list above, many groups and organisations attended, but What is Healthwatch?
Healthwatch
Healthwatch is the national consumer champion in health and care. They have significant statutory powers to ensure the voice of the consumer is strengthened and heard by those who commission, deliver and regulate health and care services.
You can find more about Lewisham Healthwatch below.
http://www.healthwatchlewisham.co.uk/
This event was also a joint event with Save Lewisham Campaign
Save Lewisham A&E was set up by local organisations, residents, Dr’s, nurses, therapists and patients because they do not believe the Tory-appointed Trust Special Administrator should jeopardise the health of South Londoners to pay for debts that were caused by years of political mismanagement.
You can find out more about them below.
Going back to the event. On the day we looked into what makes community Health care brilliant, identified healthcare that needs to be cherished to ensure future community health care.
We also learned from people’s stories about community healthcare, which gave us ideas in order to build a vision for what the best community health care could be for Lewisham.
You might have probably already guessed it, but this blog is based in the UK and mentions many UK mental health organisations off my links page. I often try to go to mental health or health community events or meetings and the “Winning the best community Health care” event was the latest.
I think we had around 40 or more turn up to the event to give their ideas about what makes the best community health care.
There are cuts coming to the NHS and these cuts will create many problems, Perhaps no one will receive the quality of health services like they did before. There is a risk that privatization will not hold patients interest at heart, plus the cuts won’t stop at the NHS, it will hit quite a lot of voluntary organisations which already are under pressure from limited funds.
Lewisham Hospital had a campaign to save the A&E, which was a long and hard fight that ended in success, but even still the hospital is under threat.
Recently the six Clinical Commissioning Groups which commissions or buys services for the doctors are running their plan for integrated care across south London. There is a lot of planning and consultancy the will be needed.
So how do we tackle such problems?
At the event we needed to define what is community health care. We have to understand that quantitative health care does not make qualitative community health care. Before this event, Lewisham Healthwatch collected over ‘100’ stories from those who used community health care in order to discern the very qualities of health care.
Throughout the day we as a group worked on declaring a vision for the perfect community health care system, we also had several members in the group produce their own ideas about burning issues for enhancing community care, which was followed by a brainstorming session.
So how did I think the event went?
To be honest, before I turned up to the event, I was not sure what to expect, but by the end of the day I could say that there was so much I learnt. I felt empowered giving my views as a carer within such a group, not only because I use carers Lewisham (which is a voluntary community service) but because who I care for also uses a lot of services.
The event also gave me a lot more opportunity not only to participate, but also to have fun in participating, plus to gain further insight into the problems of the National Health Service, which faces its greatest test ever since it was formed.
There is fear of the unknown that if such services are cut. A lot of people are worried the more things are privatized then value for money will be lost, community will be lost and quality of service would be at risk.
Not only is it vitally important Healthwatch runs such events, it is also important that the public give their views on the services they use. They do not have to always complain, the public can just make a statement or congratulate on a service.
I hope Healthwatch continues to do a vitally important role engaging and obtaining views from the community in future for the community.
A Caring Mind 