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More & more carers feel let down, often feeling disillusioned  & angry, fighting to be heard

"I have a voice, but I don't feel empowered to use it" unpaid carer

NHS People Participation

A Friend of mine was encouraged by an NHS staff member to join the NHS People Participation, it was meant well, all in an effort to get an unpaid carers voice heard to help change the Mental Health Service for the better.

Unpaid carers & service users are 'sometimes' invited to join so you can have a say in how the Trust is run.

The NHS trust promised to listen, to respect & to include, but the reality of this NHS motto, was far from the truth.

As an unpaid carer, my friend works 24/7 looking after vulnerable adults in her care, she is dedicated, hard-working, committed, honest, & compassionate & was looking forward to working with the NHS to help change the service for the better.

Motivated to help change the Mental Health Service so that other people could benefit from her experiences, what took place was devastating.

My friend faced discrimination, harassment, & victimization by ELFT staff. In the end, she was bullied out. She finally decided that the stress & trauma she experienced was not worth making herself sick with depression, it left her too traumatized.

The very people who should have listened ignored her, the very people who said that they would respect her, belittled her, the very people who said that they would include her, alienated her instead.

The way she was treated was shocking, she suffered depression, anxiety, and mental trauma.

A complaint was raised to the CEO, but they failed to respond.

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"People Participation should help Carers get involved, but I felt alienated" unpaid carer

"I was bullied & belittled, I was not made to feel part of a valued member with a voice" unpaid carer

"I was so motivated to make a difference, but I was let down by the people who should have listened" unpaid carer

"I did not feel included, valued, or respected" unpaid carer

It was a battle to be heard "unpaid carer"

"I was ignored" unpaid carer

"My voice was not heard" unpaid carer

"I was not given any help & support with People Participation" unpaid carer

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The Carers Strategy Action Plan

The government published its Carers Strategy Action Plan. Its goal, to recognise unpaid carers today.

Since then the NHS are trying to put together the NHS Carers Promise to the Carers. It promises to listen to carers and service users.

The voices of unpaid carers and service users are not always getting across, and falling on deaf ears.

Why is this happening?

Some of the answers to this question is that the government has asked an already overwhelmed NHS staff, to work with carers and service users to achieve a long-term goal, to change the NHS for the better.

This is sometimes difficult, its like asking someone to look in the mirror of truth, and sometimes this is hard to do.

A lot of NHS staff work really hard, and this is true, but it is also true that unpaid carers and service users are being asked to take on a difficult role without the right help or support.

Carers and service users taking part in the People Participation projects, do not get the same equal rights as paid employees because they're treated as a volunteer. So you are not part of the NHS and do not get the same rights as NHS employees.

If something goes wrong there is no right to a line manager, no right to a mentor, no rights to human resources, and no rights of any kind. This often makes carers and service users feeling unfairly treated, and they leave People Participation.

The problem is that there is no help or guidance from anyone, or from any other charitable organisation, and nothing from the government.

What should happen in theory does not always happen in reality.

It would have been better, in my opinion, is for the government to set up a separate organisation for unpaid carers and service users to communicate with to get the help and support they need, or provide them with a Volunteer Union, to get legal help and support to prevent unfair treatment. Similar to the employed workers union.

Unpaid Carers are already taking on a very stressful 24/7 role as a carer, often caring for more than one vulnerable adult, with both mental and physical disabilities with complex health conditions.

 

Many unpaid carers want a voice heard for their opinion to matter, and they want to take part with People Participation with the NHS, but many are prevented from doing so because of strict unrealistic work schedules given to them by People Participation, making it difficult and often impossible to participate.

Volunteers deserve the same Equal Rights as paid employees, this would at the very least, prevent workplace bullying.

NCVO website has some advice to give:

https://www.ncvo.org.uk/help-and-guidance/involving-volunteers/volunteers-and-the-law/volunteers-and-employment-rights/#/bullyingharassment-and-volunteers-rights

Unpaid Carers and Service Users need to be encouraged to speak up, to feel empowered by that voice, to voice their opinions when things go wrong, and to do so in a safe environment that makes them feel that they are being 'heard' and taken seriously.

'I hear your VOICE'

This should be the message the government needs to send out.

Carers need a safe place to land, reach out a hand to unpaid carers, hold it strong, don't let go, don't judge, have the compassion carers need, be the salvation of hope, be the light in the dark, the sympathetic voice through the fog of fear.

Equality is vital, the voice for all unpaid carers and service users, without judgement, without fear, and without bureaucracy.

Carers are the
experts-by-experience

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The Department of Health & Social Care prepared a government paper called the Carers Action Plan 2018 - 2020 Supporting Carers today, you can read more about it in the link below:

https://www.gov.uk/government/publications/carers-action-plan-2018-to-2020

The paper/document sets out the government's plan to give recognition to unpaid carers, and more importantly, a Carers Voice.

Unpaid Carers save the government billions in health care costs, including care costs from local government funding in social care services.

To doctors, unpaid carers are the experts-by-experience turning treatment plans into reality. Unpaid Carers are indispensable members of society, often close family members that make each day possible for those they care for, young and old, Carers are the spinal cord of anyone who needs them.

Unpaid carers are doing the same work often provided by care co-ordinators, nurses, advocacy service, and the same service provided by care home staff, but they go the extra mile providing emotional and practical support that makes every day that little bit easier to live. Without them, the most vulnerable in society would simply fall through the net, with many taking their own lives, or living in misery.

Often Carers will put their own health and well-being last, missing GP and hospital appointments because they need to put others first.

Unpaid Carers keep going even through the darkest days motivated by love for the people they care for, even when the NHS often don't provide the help and support they need, failing to meet the needs of the carer.

The government recognises that Carers are vital partners in the health and social care system and a sustainable settlement for social care will simply not be possible without focusing on how our society supports carers.

Its a 'Mind Set' of the NHS that needs to change towards unpaid Carers and their role in the lives of the most vulnerable in society with physical and mental illness and learning disabilities, both visible and invisible disabilities.

The Call for Evidence was launched in preparation for a Carers Strategy plan. This is perhaps the most vital part of the Carers Strategy plan, without 'The Call for Evidence' a Carers Voice will not be possible.

So what is the government doing to make sure 'The Call for Evidence' from unpaid Carers is being rolled out to hear the voices of all unpaid Carers nationwide?

When 'The Voices' of unpaid carers and service users fall on deaf ears, where do you go from there?

Carers want ACTION, Carers want more SUPPORT, Carers want all the charitable organisations to come together as ONE organisation and PUSH for CHANGE, the changes that matter to CARERS.

The government has called for action, recognising that more still needs to be done.

 

"I'm always in the arena, fighting to get my voice heard as an unpaid carer, I put my vulnerability out there & got hurt by the NHS, I was bleeding, but there was no one to help me up again, so I watched this video & understood that my courage to voice the things that are wrong in our society will always get hurt by those that are too ashamed to own up to the truth of their own wrong-doing"  Unpaid Carer

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Don't Give UP on Life!

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