Since 2010 I have run Your Voice Matters, a campaign working hard to expose and stop neglect and abuse in care homes. I have engaged with many on the NHS side of the fence. I feel so concerned by the experience of this, especially over the last week, I have decided to write on it in my own simple way!
I am not an academic, but I feel I have something far more valuable than any formal qualification for the cause we fight for – life experience, and that is the same for my Team at Your Voice Matters.
NHS is so very important. There are many fighting for it, including highly qualified health professionals, with the support of national media journalists. Who is the voice for social care, the forgotten partner in care? Why is social care treated like the poor relation and made to feel we do not matter?
We hear of whistleblowing and it nearly always refers to the NHS, with mention of health repercussions, anxiety, depression, loss of relationship, reputation and job. The Robert Francis Report in 2015 highlighted this.
Whistleblowers are not only NHS employees, they are social care employees too. Where are families mentioned within this topic? Rarely from what I have seen. We have been forced to whistleblow because the professionals won’t, yet families also have much to lose – Health, anxiety, depression, loss of reputation, job. They also make huge sacrifices. Are they not important too, just because of the job they do or don't do?
Communities are shocked when bad news breaks in the media, but within days it is forgotten, until the next time. However, when there is a threat to NHS services, that outrage does not diminish. Ageing affects us all, many of us will need care. No one is immune, so why not more interest in social care?
The media are there when there is a headline story to shock the nation and we are grateful to them for that. However, we also want them to taken an interest between the steady stream of bad news. So many times we contact the press, but the 'story' we discuss is not big enough. I think it is shocking that media Editors judge a story, deciding whether it is newsworthy or not. Every act of neglect and abuse against anyone in a care home is one too many. Their life is very worthy, every one of them. Neglect and abuse in carehomes is now normalised.
After trying to find good care for my Mother-in-law with dementia and running this campaign, I have the perspective of being a relative, and I have been able to understand (as much as I can as someone not working in a care home), the perspective of care staff themselves. Only by their courage of sharing information with us, and having Christina join our team as someone who was not only a relative, but also an employee in a care home, have I been able to gain this invaluable insight.
It has become more and more noticeable that NHS campaigners very rarely champion social care issues, very blinkered on their own cause, yet social care impacts on NHS, for me they go hand in hand. Sadly, even when you do highlight the fact that many issues they challenge, we do too, the majority remain disinterested, dismissing views of the non-professionals, unable to trust the other person's judgement, even though they are based on actual experience.
In our daily work at Your Voice Matters, we speak to families and care workers. We deal with issues involving the CQC and their failure to act effectively on information we share with them at senior management level. We know other campaigners across the UK who have also met with CQC senior managers and have had the same experience as us. How many more are there who challenge them that we do not know about? CQC have had information feedback overload, yet what changes? Nothing. Our views on the CQC are dismissed by many, yet they have not seen first-hand the devastation their failures cause as we have. They believe the words of those who are paid to say the right thing, they are well rehearsed. A blog on CQC is for another day, but that is just one example of the ‘professionals’ do not always know best, but more importantly, are not open to learn from others on the ‘other side’.
It comes across to me that NHS is all about facts, strategies, people, as I have seen very little emotional connection, understanding, empathy or respect to others from outside the NHS, who also have serious concerns about care.
Social care campaigners connect to the challenges NHS face, are interested and support, but this is rarely returned in our experience.
I can compare the relationship between NHS and Social Care to the experience of a family raising concerns to a care home manager.
The problem we hear time and time again is families are met with a defensiveness when they take a simple concern to a Manager, an attitude of ‘what exactly is the problem’, with the Manager failing to understand exactly why this relative is so upset. On the other hand, many relatives’ first thought when they have a concern, is they worry about mentioning it, they don’t want to make a fuss, don’t want to upset anyone. It is then the refusal to acknowledge the concerns by the Manager that causes the situation to escalate. The relative becomes frustrated, angry even, and then BOOM! They are now the problem.
There are real issues regards communication between many health professionals and non-professionals, a major contributor to the problem we face in care. We hear the talk on the big words like Trust and Respect. For families who have challenged bad care, trust is a huge factor, but it does not stop us from showing empathy to others who face similar challenges, whether they are NHS or social care. We are connected to emotion. Is this because many campaigners for causes under the 'social care' umbrella do what they do because they have had personal experience and have empathy, where NHS staff it is their job?
We have recently been accused on social media by Dementia Expert Dr Shibley that we are aggressive and we were subsequently blocked. I went to him as someone qualified in his subject in good faith, to ask if he considered Dementia to be a Mental Health issue or not. I fear that question may have been too contraversial and one would not want to upset the 'applecart' with Shadow Health Ministers being tagged into the post. Yet Politicians and other professionals continue to congratulate him on his latest book. We then go on to find several others who have had no communication with him also blocked. Why is the truth feared by so many?
Politicians are no different. They choose to trust ‘experts’ in care, respecting their views, even though these very same people are in fact part of the problem we now have with our care home sector. Very few Politicians do not give the same respect to grassroots people, where they could learn so much.
In 2015 we were invited to meet the Rt Honourable Andy Burnham MP twice, who at that time was Shadow Health Secretary,Shadow Home Secretary. The first time in 5 years any Politician had afforded us their time, listened, respected our views, asked our opinons and wanted to continue to work with us. It felt amazing and finally a positive step in the right direction. Why do the majority devalue those who have so much genuine passion, knowledge and are willing to give it freely?
I have just caught up watching the first Prime Ministers Question time September 2015. New Labour Leader Jeremy Corbyn, during a debate on Mental Health when referring to a Mental Health Nurse "Angela is a professional so she knows exactly what she is talking about". That is not always the case, and we see it time and time again here at Your Voice Matters, a qualification does not give you a certificate to say you are right on everything. We do not say we know everything or are never wrong, the difference is we are not scared to say so.
If Politicians do not do change their attitudes, and continue to trust those who helped create and maintain the shocking care home system we have now, the cycle of bad care will continue, the pattern will never be broken.
My Message to NHS Campaigners:
We may not have high profile jobs, but we are knowledgeable, passionate, genuine and honest. You have many fighting your corner, we have no one. Please give us the consideration we deserve and do not judge us unfairly.
My Message to Politicians:
If you want change the care home crisis, you must stop trusting the experts and involve ordinary people more. Move out of your comfort zone, move away from the care 'Establishment', do your research and find out who if someone is as true as they say they are. You will be pleasantly surprised by how much grassroots people can bring to the table and help YOU stop elderly neglect and abuse in our care homes.
Stop the cycle of profits over care and cover up culture in care homes in this country. Help us achieve it.
Imagine what could be achieved if people all worked together, rather than playing 'the game' with peoples' lives.
I want to see an end to this ‘them and us’ situation between NHS and Social Care and for Social Care to find a voice. Who will help us?
Listen to our Voice - It Matters
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