Lewisham MH Carers forum August 2019 update

133Welcome to the August update of the Lewisham Mental Health Carers forum. This forum runs from Carers Lewisham over by Forest Hill, just near Forest Hill train station. The forum focuses on unpaid carers who support/care for someone with mental health needs e.g. schizophrenia, eating disorders, bipolar, major depression, addictions and so on. I even try and involve those caring for learning disabilities.

The forum tends to try and form a relationship with the local mental health trust, that being South London & Maudsley, we also seek for ways to educate, discuss and empower families and carers. We also seek engagement from Lewisham Hospital, Lewisham CCG, Lewisham council, Lewisham Healthwatch and other important stakeholders.

I have always mentioned to members or perhaps anyone that knowledge and information is power. So for August we were very fortunate enough to have South London & Maudsley’s former Patient Information Manager. Roslyn Byfield is a trained Counseller and therapist, she has her own practice and is very active in discussions about BACP, which stands for the British Association for Counselling and Psychotherapy. I have known her for quite a while now and was happy that she took some time out of her schedule to engage with families and carers.

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As she placed leaflets and booklets on the tablet for carers to take, it brought back a lot of memories. Infact one of the booklets, which was the physical wellness booklet won an award.

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We were hoping to be joined by SLaM quality Improvement, but they are more likely to attend in September. Plus in some ways, perhaps that was a good thing because the forum had a major discussion with Roslyn. Part of the talk was on carer empowerment and several organisations were mentioned. We also talked about the Government’s anticipated release of the Green Paper which focuses on Social care, but there has been major disappointment that political parties are kicking the social care can down the road. There was also talk about the Carers Action Plan, but many are skeptical about it.

In regards to empowerment we were told to form links regarding the NHS Constitution and focus on the Human Rights Act 1998 and the Equality Act 2010 as well as the Care Act 2014. We can make the mistake of trying to hold authorities to account, but its very hard to do that on your own and getting links to the human rights organisations can really speed things up if carers are not given the right information and support.

Here is a link, which might interest unpaid carers on their human rights.

https://www.bihr.org.uk/carersguide

The forum also focused on European Convention on Human Rights and what to learn from them. This could be useful if policies really begin to put pressure on carers and it would be important to make links.

At some point I will map out organisations to pull in to educate families and carers and also form stronger links as high up as possible.

There was some talk about the review of the Mental Health Act, which hopefully can put a spotlight on how families and carers can be pushed aside, especially when a loved one comes to harm, neglect or serious incident. We spoke about the problem with documentation from the health services, but it was mentioned some documents can be complex to stop people delving too far into things. It can be a strategy at some meetings to place jargon to ward off stakeholders querying why NHS systems are not working or why is there a high rate of Serious incidents. A lot of talk was on quality improvement, but without engagement then some members were wondering what to do.

We were focusing a lot on NHS constitution Section 3A and how it can support families and carers. Plus focusing on the National Institute for Health and Care Excellence. It does not help that guidelines are not enforceable and there was queries as to why NHS services are struggling. It does not help that funds are lacking for NHS trusts and then government places targets putting staff under pressure, which in turn affects families and carers.

We did not spend all the time focusing on carer empowerment, but also on therapy and counselling. I myself certainly have had not very good experiences with counselling, especially family therapy. I felt the outcome was a way to cover up the lack of services and then blame the family or carer for the patient relapsing. Some carers are in a worse situation when they are pressured to admit they are the cause of mental distress, leaving them confused, stigmatised, ashamed and isolated.

This is when accreditation came into the discussion. It is well known that there are good and bad counselors, but what happens if accreditation does not pick out the bad ones? Who is to blame? The big push for IAPTs has caused a massive break up of the counselling industry. Some people feel that counselling is not a journey, but now like popping in for advice. Roslyn mentioned counselling should not dis-empower the patient into looking for advice. Counsellers need to have life experience before they can examine someones life, no course be it a BSc or Honours would be enough for such a profession. There was talk about the BACP and PSA (Professional Standards Authority), which carers should keep an eye out for updates.

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Lastly there was talk about how carers MUST make time for themselves, it is important to look after our own health and wellbeing with emphasis put on spirituality. Many of the members felt that they were pressured to focus on their cared for, but it was mentioned that such mindset should change. It was however not an order but to be mindful of our own health needs.

Below was a set of tips given by a veteran carer.

• Seek help at an early stage
• Don’t be ashamed of mental illness
• Speak out if you think something is wrong
• Take care of yourself with counselling and exercise
• Keep in touch with your spiritual side

I was glad that Roslyn had time for the forum and will certainly follow up on making those links. The forum was told that they already have the resources to make some serious pathways, but there still needs to be some support for empowerment.

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This concludes the August update for the Lewisham MH Carers forum.

Lewisham BAME MH Carer Forum August 2019

me_edited-1Welcome to another update from an unpaid carer who is involved in their local mental health trust and communities. I often try and engage with communities as much as possible, be it through running carer strategy groups, giving my views and engaging with events.

For the August Lewisham BAME Mental Health Carers forum, we focused on Patient Participation Groups and also updates from the South London and Maudsley Inpatient Social worker over at Lewisham hospital.

The Lewisham Black Asian Minority Ethnic Carers group is one of the 4 groups that not only focuses on carers, but makes a distinction on their background, culture and ethnicity.

BAME groups are more likely to experience stigma and distress due to cultural interpretations and systems set up or designed that does not take into account BAME communities. Lewisham is certainly one of the most diverse London boroughs around so it really helps that communities get together to discuss and educate each other on issues regarding health.

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The Lewisham BAME carers forums also accommodates those using services, but there still needs to be a drive to engage with more BAME carers who are very uncertain of their role and perhaps lack peer support and identity.

The carers forum runs from Lewisham, Bromley and Greenwich Mind under the Community Wellbeing umbrella.

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Lewisham Community Wellbeing is delivered in partnership with several other local charities and public sector organisations. We have been very lucky to get the support of Mind who probably have a lot on as it is and there will be some very exciting community projects coming up soon.

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We have around 45 to 50 doctor’s practices in Lewisham and I was fortunate enough to have the chair of one of the largest doctors practice in Lewisham. Alexandra Camies does an immense amount of work engaging with patients for the doctors practice she helps with. The doctors surgery is also a member of the National Association Of Patient Participation or N.A.P.P. I have always said to carers and patients that doctors are usually the gatekeeper to services, if you feel your doctors practice could do more for you or the community, perhaps look into how their Patient Participation group works.

So what is a PPG anyway? What do they do?

  • PPGs offer patients an opportunity to be involved with and support their local General Practice. For the South Lewisham Health Centre. Here are some of the following things that PPG involves.
  • Patients wishing to join must, in order to comply with General Data Protection Regulation (GDPR), complete an application form.
  • They currently have a committee of 8 patients, including aChair and Secretary.Committee members are provided with written details of their roles, responsibilities and key relationships.
  • They have the assistance of the surgery Patient Liaison Officer, who attends each meeting and provides us with any help needed at the surgery.
  • They have a GP representative (usually a partner), and the Patient Services Manager that attends the meeting.
  • All members are invited to general meeting, held quarterly, and asked if they have any agenda items to put forward for discussion.
  • Members that are unable to attend are able to have a virtual input via email. Virtual members are sent copies of the minutes, which are also placed on the practice web site for all to view.
  • Committee members take on a little more responsibility at the South Lewisham PPG, taking a part in organising events or projects, or helping with various admin tasks. Committee meetings take place as and when needed.
  • Members may be being asked to help out for such things as events.

Take note not all doctor’s surgeries are alike. Some do not have the resources to have a PPG, but it does not stop patients from helping set one up. I explained to the forum that your doctors surgery is only as good as the community that cares for it and uses it.

How can a success for Patient participation group operate?

  • The PPG should try monitor progress against objectives
  • Publicise their successes
  • Involve people and not that would mean patients, especially those whose voice is not often heard.
  • Learn from other groups, usually other PPGs hence the PPG Network.
  • Build on and work with their network of health and wellbeing groups and organisations.
  • Expand activity where possible
  • Make sure to review our objectives regularly

There are only a very small part of what a PPG doctors surgery should work towards. Alex gave the group an excellent presentation and we both learnt and picked up ideas from each other. I reminded the group that they could start their own projects and inquire about their local doctors patient participation group.

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If you want more information about South Lewisham GP Practice, check out their website below.

http://www.southlewishamgrouppractice.co.uk/

Next up was Errol Chambers who is the social work for the Lewisham Hospital Ladywell unit. It was great that SLaM engages with the BAME forum, because I have always stressed the the forum represents empowerment when we form as a group. If SLaM staff recognise this, then they can support us, although we try hard not to be antagonistic. Errol gave us a choice on what information the group would want be it on benefits or on how the Ladywell unit is operating currently. The group wanted updates on the ladywell unit and we discussed changes and progress regarding patients experience of the mental health unit.

Lewisham CCG was mentioned quite a lot as they invest in the services and are keen to see if the hospital is working to the best of its abilities. Many members pressed for a relationship with the units, but also felt that staff development must be key as a good quality service. This is mainly down to how staff engage with patients and their carers.

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At the end of the forum, I updated on the planning meeting for Lewisham CCG’s stakeholder event and also for Lewisham’s Carers conference requested by my MP Janet Daby who is a carer herself. I also pointed out that the Lewisham HR lead will be at the BAME forum for September. I have asked we are updated on the following.

BME staff engagement – What else is happening to engage with BAME community.

Plus small updates on the following.

  • SLaM’s Health and well-being strategy
  • SLaM’s Talent management programme
  • The South London Partnership collaboration (South west london & St georges, South London & Maudsley and Oxleas NHS Trust)

Plus an update on whats been done for staff to tackle.

  • Equal opportunity for career progression
  • Violence
  • Bullying & harassment
  • Discrimination
  • Stress
  • Flexible working

I guess as a carer, I do not ask for much. Still, I mentioned to the group…knowledge is power.

That is the August update for the Lewisham BAME MH carers forum.

Lambeth MH Carers Forum update August 2019

Welcome to the August update of the Lambeth Mental Health Carers forum. As a reminder the Mental Health carers forums are not primarily focused on discussing mental health benefits, but are aimed at carers supporting those with mental health needs. The forum usually has organisation who either provide mental health services, commission them or oversee the services e.g. Lambeth Council, South London & Maudsley, Lambeth CCG and Lambeth healthwatch besides others.

For the August forum we were fortunate to members and representatives from Maudsleys Older Adults and Dementia Advisory group. They presented to the forum what the group does over at South London & Maudsley and how they work with unpaid carers who are caring for those suffering Dementia, Alzheimers, Parkinson and so forth.

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Before I continue on with a brief update of the work of the older adults Clinical Academic Group, we also had on the August agenda the following.

I updated the member of the mental health Act debate, which focused on the reform of the mental health act and any pressing issues the government needs to take account of.

The debate was led by MP Neil Coyle Labour of Bermondsey and Old Southwark. One of the forums I hold being at Southwark Carers was invited to view the debate, but unfortunately many of the carers could not attend, so it ended up being the members of the Carers Lewisham forum who have visited parliment before.

I did actually update the members of the Southwark Carers forum the next day, particularly one of the Service user SLaM governors who was interested in attending, but most members are not sure what is to happen next. The Lambeth members are pleased to hear that Helen Hayes can attend in a joint Southwark and Lambeth MH carers forum around November.

Going back to the parliament debate, the following MPs took part in the Mental Health Act reform debate.

Nick Thomas-Symonds Shadow Solicitor General, Shadow Minister (Home Office) (Security)
Janet Daby Labour, Lewisham East
Kevan Jones Labour, North Durham
Debbie Abrahams Labour, Oldham East and Saddleworth
Julian Lewis Chair, Defence Committee
Kerry McCarthy Labour, Bristol East
Johnny Mercer Conservative, Plymouth, Moor View
Steve Reed Shadow Minister (Education) (Children and Families)
Alex Cunningham Labour, Stockton North
Barbara Keeley Shadow Minister (Mental Health and Social Care)
Jackie Doyle-Price The Parliamentary Under-Secretary for Health and Social Care

Many members of the forums are interested in any more updates regarding the mental health act, because obviously whatever the government decides will affect families and unpaid carers supporting their close relatives who have mental health needs.

I also updated the Lambeth Forum on updates regarding the other forums I hold.

Being the following.

Southwark Carers

– Will have an NHS Serious incident investigator in doing a talk tomorrow at Southwark carers from 4 pm. She is a carer herself and could not make last month, but hope she attends tomorrow as she emailed me stating she is available
– I have also emailed Southwark council to attend again updating on their new carers group and any knowledge of the refresh of Southwark’s carers strategy. Southwark council now has a new project manager for the carers strategy.
– Southwark healthwatch are querying each of the 3 NHS trusts (kings, SLaM and G&STT) on their carers strategies and will update the forum

Carers Lewisham

– I have arranged for the past information manager and counselor to do a session next week about the importance of therapy. She is a member of the BACP – British Association for Counselling and Psychotherapy. Which has made me aware of the lack of counselling and therapy for carers and service users.
– I have also arranged for SLaM quality improvement to engage with members for that day, and hope Aaron Brewer who is Quality Improvement Facilitator to attend or send someone else to attend to see who SLaM is doing on their quality improvement.
– I will update the Lewisham forum on the meeting I had with representatives from Lewisham council, Lewisham CCG and Lewisham carers chief exec on a bid we are making to build a Carers Lewisham ‘carers academy’. This bid goes to the governments carers innovation bid scheme and if successful we can train carers on several important aspects at the academy.

Lewisham BAME carers forum at Bromley Lewisham and Greenwich Mind

– I have arranged for the PPG chair of the largest doctors surgery in lewisha, to come in and educate the members about PPGs and carer focus at doctors surgeries. She might speak about the Lewisham PPG network.
– I have also arranged with the help from SLaM for a social worker Errol Chambers from the Lewisham Hospital MH unit to speak to members about his role.
– I will update the members on Lewisham putting together a carers conference raised when my MP Janet Daby attended earlier this year. One of the members spoke to Lewisham on how the conference should look like.
– I will probably also update the proposal from the Lewisham Senior commissioner CCG Karin Barthel on planning the Lewishams CCG stakeholder event.

As you can see as a carer I am busy querying lots of updates.

Going back to the Lambeth forum. The older adults advisory group works through the Psychological Medicine and Mental Health of Older Adults and Dementia Operations Directorate (PMOA). On the group are Service Users and Carers Advisory Group (SUCAG) members, over the years they have made many achievements one being project ‘If Only I’d Known’ where they seek to educate unpaid carers regarding for caring for older adults with dementia.

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The Academic group has been involved in contributing to SLaM’s End of Life Pathway, helping in selection and recruiting of staff. Plus having helping and being involved in research at Kings College London. The group have been busy engaging with SLaM’s inpatient wards especially focusing on families and carers there who are unsure of their role.

Royal College of Nursing involvement day

Rcn-logoThanks for stopping by. Here is another blog post by unpaid carer Matthew Mckenzie. This blog post is about involvement, but I have added to this post my involvement with another organisation the Royal College of Nursing. Usually I spend most my time at carer or community centres running family and carer strategy forums. We aim to engage with hospital trusts, healthwatch, health commissioners and councils. Most forums look to increase education and engagement on mental health and the health services.

Still, education is not enough and there should be involvement and empowerment for services users and carers. Anyway, I would like to put a bit of background into the RCN otherwise known as Royal college of Nursing. I have been hinting about nursing and the Royal college of Nursing from my previous blog posts, although there are many other organisations I will post about soon.

The RCN represents nurses and nursing, promotes excellence in practice and shapes health policies. It is the biggest and well known union for nursing in the UK. They do not just represent nurses, but also midwives, Mental Health nurses, health care assistants, assistant practitioners, student nurses and trainee nursing associates.

They have around half a million members and are growing in number every day. The RCN also have a vast history in the field of nursing and have made major impacts in advocating for the field of nursing in the UK. The RCN also runs forums, consultations, conferences and allows members to get involved or even become an RCN Rep.

It has not been an easy time for nurses or the NHS at present, I am not going to get too political today, but never has there been a greater need for the RCN to vouch for nursing as pressure is brought to bear on nurses via lack of funds, bursaries and incentives to stay in the industry.

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The RCN now wishes to expand its involvement and has been honest that in its prestigious history, it has lacked the drive to engage with its mental health patients, however many a large organisation can fall into this situation, although some are worse than others.

I have noticed that the RCN looks to take on engagement and involvement policies regarding its mental health programme, but to do this it must feed into its patient forum and also draw from Triangle of Care representatives. Of course no one is going to say such a drive is not without its challenges, but the sooner work begins on involvement, then the better the outcome.

Early this august I was invited to the first of many reference groups to collectively figure out inclusion and co-production within the RCN. I was joined by many patients and carers like myself. I did hear that reps from a mental health forum could not make it, but hope they are free next time.

The group was chaired and facilitated by both Catherine Gamble and Tim Coupland. Catherine is a RCN Mental health lead & Head of Nursing. She is also proactive in eduction practice & research at South West London and ST Georges NHS Trust. Tim Coupland is the RCN Programme Lead for Parity of Esteem and promotes many policies on mental wellness for all including nurses themselves.

I will not go into too much detail on how the group went, but I felt I was very looked after at the group and I felt everyone got their chance to have their say. We had many passionate and rich experiences from the members of the group, everyone truly deserved their place there. I was amazed that some members have had an impact promoting nursing and service user experience in other countries.

We each also asked what our involvement and interests lie, where mine was on the NHS Long term plan, mental health act and Suicide prevention due to my involvement at South London and Maudsley Suicide prevention group. I was excited to hear that the RCN have representatives engaging in the areas I have raised.

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There is however a lot I can say regarding involvement, inclusion, engagement, co-design and co-production, but I think I will leave that to another blog post. There is much out there that carers like myself can get involved with. We never have enough carers getting involved at an exciting and challenging time in the health services.

You can find out more about the Royal College of Nursing from the link below

https://www.rcn.org.uk/

My summing up of the day is that there is a lot of work to do, but I feel that the RCN as a body is massive and offers many opportunities even if it is just to understand its core principles and the future of nursing.

Carers and GP Surgeries

me_edited-1Welcome back to another blog post by unpaid Mental Health carer Matthew Mckenzie. I often write blog posts that try to focus on carer issues, but sometimes I stray into areas of mental health, events and the field of psychology, sociology and maybe psychiatry. Of course I don’t stop there. I run carer engagement/strategy forums in south London and every so often I tend to update how they went on this site. Feel free to check out my Youtube channel or twitter channels where one channel focuses on the carer experience and the other channel on mental health developments.

Enough with the shameless advertising, this particular post is on a much needed subject and it is aimed at unpaid carers, however I hope GP surgeries get the time to read considering at the last Lambeth forum there was major discussion on the Lambeth Patient Participation group network. I have also arranged for the Lewisham PPG chair of South Lewisham Practice to present and update the members of Lewisham BAME Carers forum.

But what if you are a carer and are dithering on visiting your GP or doctor regarding who you care for, or even yourself?

Young couple gets counseled by a doctor

My first advice is not to dither or wait it out. Vising your GP can help make major decisions easier. There are very good reasons why it is so important to visit your GP and one of them is if you are feeling unwell. Most carers tend to visit their doctor due to raising issues on their ‘loved one’s’ health.

Still if you think the person you are looking after might recover, then it is still a good idea to check up with your GP. Some chance is better than none at all.

Whats the risk in putting it off?

I bet if I was to look for some stats, then it would be horrifying. Too many people across the country tend to delay or put off from visiting their GP, males can be the worst offenders and then things get too late to be detected. Carers, especially those caring for someone with a mental health need, should be more cautious. The reason usually is that if someone suffering mental illness, it can be very hard to let others know of physical health problems as well. Families and carers need that professional advice to help come to a decision to get access to other health services.

GP as Gatekeeper

It is well known that a doctor is the gatekeeper to other services. Without referral to other services then recovery or support is that much harder for the patient.

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Many might be still waiting for access to their mental health trust, while some might be trying to access psychological therapies, although it has been made self referral. GPs should know where to send patients or carers if they are in need of specialist support.

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Reform of the Mental Health Act Debate

parliamentI was recently invited to observe an important debate regarding the Mental Health Act review. The debate was held at Westminster Hall over in Parliament on the 25th of July 2019.   It must be only the second time I have visited Parliament and if some of my forum members was not there, I would have easily got lost.

I have to thank the Lewisham carer members for attending the debate, it was a lot to ask of them. I wanted to also ask the Lambeth carer members, but that forum was on the same morning and I had to cut my chairing of the forum short. One of the members from the Southwark carers forum wanted to attend, but was held up and I know she is very involved in the mental health act review.

Before I continue, what is the mental health act?

The Mental Health Act 1983 is an Act of the Parliament and it covers how people who are brought into mental health treatment. The MHA also covers the care of mentally unwell persons. There are cases when a person can be detained, also known as sectioned, under the Mental Health Act (1983) and treated without their agreement.

It is important to remember that under the Mental Health Act (MHA), you can be detained if Mental Health professionals think your mental health puts you or others at risk, and you need to be treated in a safe environment.

When someone mentally unwell ends up being detained, they have certain rights.

– They have the right to appeal, and the right to get help from an independent advocate.
– To have someone explain what happens to you and why.
– The right to ask questions on why you are detained.
– The right to confidentiality, although this can be a tricky area.
– The right to be involved in your care plan.

There are also many other rights including equality, but these and other rights can be saved for another blog.

Why was there a debate on the mental health act?

The area many reasons for the debate on the mental health act, the most common being that the times have changed and the mental health act 1983 needs to reflect the changing environment. There are also problems with the mental health act, and I mean big problems.

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The previous Prime Minister asked the Professor of Psychological Medicine at the IOPPN (Sir Simon Weesley) to review the Mental Health Act. There have been numerous challenging mental health cases that challenge the legislation of the mental health act. These cases are very tragic and have lead to many serious incidents and investigations. Some cases have had very long delayed investigations and many patients and their loved ones have suffered for it.

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Health and Well-being in the community

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Welcome back to another blog post by unpaid carer Matthew Mckenzie. I am happy to have been able to write up some posts, despite being fairly busy. I want to put a thought in your head, I know in this society, we do not often have time to stop and reflect. Living in this fast paced life it is so important to stop and think ever now again.

The thought I want to put into your head is this. “Have you thought about where you live”? Is it in the city or suburbs? Maybe a village or town. Perhaps this is not even a deep thought when you step back and observe, but it does not end there. When you look around, what do you see? Are those around the area as busy as you are? Or perhaps do they seem to be more relaxed? Maybe they are letting the world go by.

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Now think about your health and wellbeing, are you lucky to have good health? It is not as easy as everyone thinks, because we are so busy, it is hard to find the time to eat well, exercise or even get a good nights sleep. We all know what happens if we cannot look after our health and wellbeing, but if you are curious then I will explain later.

Being Alive

If you are unfortunate enough not to had the time to stop and reflect then let me put another thought in your head. Do you know that you are alive? Seems weird doesn’t it. Of course you are alive otherwise you would not be reading this right now. Still, its amazing when you really think about it. Your heart is pumping blood around your body, you are able to see the words of the screen and now think about how you are breathing. Thats it!! you are reflecting on your health. It is one of philosophy’s ways of getting people to stop and think. Sometimes we are pressured into doing so much, that when the time has come, we begin to query where our life has gone. We are so focused in keeping up with the rat race (to mildly put it) that we have not stopped to marvel at our health.

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It does not end there though. So you realized you are alive, brilliant! but what about everyone else in your area or community? Are you wondering if they are thinking the same? About their health and wellbeing? Does it look like health and wellbeing is doing well in your area? Perhaps do to the town centre, what do you see? Does the area look healthy?

Being alive has its responsibilities

Being alive does have its responsibilities. We must try to be aware that every decision we take affects our health. To be a healthy person, you have to make healthy choices. Sometimes we have the information and power to follow up on those choices, but its not the same for everyone. Depending where you live, you might not get all the options to decide how healthy you will be. A community is only as healthy as much as it is supported to do so.

Still, because of community, we all have a part to play. If one person makes the choice for a healthy life, then others can learn and follow. Especially if they observe what we all have in common. Being part of a community means we have something in common, we often have to share things and express our identity. What one person does in the community usually affects the community some how. If the trend in the community focuses on healthy lifestyles then it will influence more in that community.

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