Families – the Key to Person-Centred Care

Letting Go

One of the hardest parts of being a parent of someone who is very vulnerable is learning how to trust other people to share in the taking care of them. My son, Toby, is now 23 and he has severe intellectual disabilities, he is non-verbal, he is also autistic and he has complex and very serious medical issues. He is also hilariously funny with an enormous personality and he loves people, unless things aren’t going entirely his way when his behaviour can become significantly challenging.

Over the years, I’ve had to let go and trust other people to care for him, knowing full well that if they slip up and miss some tiny detail, it could become life-threatening in the blink of an eye. I’ve had to trust health care professionals during dozens of hospital admissions. I’ve had to trust school staff and college staff, respite staff and carers.

It hasn’t always been easy to step back with someone as vulnerable as Toby, and the number of people with whom I’ve had to share the care must run into the several hundreds by now. Many of those people have been truly wonderful, understanding perfectly what “person centred” really means, and making sure Toby has benefited from the very best of holistic, tailored care with a sense of fun and connection thrown in for good measure. Sadly, though, there have been a few that we remember for all the wrong reasons, people who have taken Toby’s well-being to the brink of disaster.

Good Care and Bad Care – What’s the Difference?

Good care and bad care – on paper they cost exactly the same, but on lots of different levels the cost becomes too high when it goes wrong. So, what is it that actually makes the difference?

For me, as a parent, the reason for that difference is crystal clear, because I’ve seen it happen so often. In my experience, the difference is nearly always entirely down to whether or not the staff member concerned , and I, as the family member, have a good relationship, built on mutual trust, respect, acceptance and understanding. Nearly always, if a staff member can’t build a relationship with Toby’s family, they are likely to find it hard to build a good relationship with Toby too, which is absolutely key to whether things will go well or not.

Teamwork is essential

As a parent, I learnt quickly that Toby needed everyone who cares for him to work together as a team, to listen to each other, to share our own experiences of being with Toby as truthfully as possible, and to accept each other as being able to contribute different facets of expertise to ensure that Toby got the best and most consistent care possible.

It also makes everyone’s life much easier when we can all collaborate to make Toby’s life better. If he can see that you and I have a good working relationship, he’ll pick up on that too. For someone who has very limited communication, I can’t stress how vital it is that Toby can clearly see that we trust each other because he will take his lead from us. If he picks up that we get on he will trust you much more easily, which means you’ll see the best version of Toby much more quickly, the one where he is at his most confident and happiest.

 Toby needs us to develop a good working relationship as quickly as we possibly can. Here are some thoughts based on our family experience of working with carers over more than two decades that might help us all to make it happen.

 15 Thoughts on Working with Families

1. You and I are both experts, you are trained in what you do, whilst Toby has trained me himself in knowing all about what makes him tick. If we can put our heads together and share what we both know, Toby’s care becomes easier for everyone, his team becomes stronger, and his well-being is more secure. 
2. It’s not a competition. It’s not about trying to impress each other about what we know or what we can do, it’s actually not about you or me at all. This isn’t a point-scoring exercise, nor is there any room for any sense of judgement, finger-pointing or blame whatsoever, on either side. For Toby’s sake we need to try to bring out the very best in each other and to be prepared to give each other the benefit of the doubt and to cut each other a little bit of slack sometimes.  It’s all about Toby, his well-being, happiness, safety and security, and we owe it to him to all work together to ensure that if there are any outright winners, it will be Toby himself every single time. 
3. It’s OK not to know everything. Nobody knows everything, and it’s a sign of strength rather than weakness to admit it. When you let me know you’re unsure about something and you ask for my input, you’re showing me that you want to find out more, and that actually inspires my confidence in you.  It makes me trust you more, and shows me that you care enough to try and get things right. 
4. Please listen to what I’m saying and believe me too. Toby and I go back a long way, and we’ve been through thick and thin together. Over the years I’ve learnt about what he likes and what he doesn’t, what makes him happy and what’s likely to make his behaviour become more challenging. I know what calms him down, as well as what might trigger a meltdown. If you let me tell you everything I know, it’s going to make your job much easier too. 
5. Parents can get a very bad press. Yes, there are some cruel, nasty and abusive parents. But equally, there have been some pretty cruel, nasty and abusive professional staff too in virtually every discipline – teachers, doctors, care workers, nurses and many others. However, the vast majority of people, parents and professional staff alike, are doing our very best to get things right. Please trust me, and I’ll trust you too.  I have Toby’s back like you wouldn’t believe, and I’ve always done my very best for him. Please always assume that the overwhelming majority of parents you meet will only want the very best for their child. Life isn’t always easy for any of us, and a little bit of open-minded kindness can work wonders in making life that bit better for everyone.   
6. Toby and I have some strange ways of communicating with each other that we’ve developed in the absence of his spoken language. We sometimes must seem very odd indeed to outsiders, but it’s working for us. Please don’t judge me on having developed parenting communication strategies that you probably wouldn’t ever find in a conventional parenting manual. 
7. Parents get bad days too. Just like you and your colleagues, we’re not always in the best of moods, and sometimes the hurt we feel on our children’s behalf, coupled with the sense of powerlessness, sadness, frustration and fear that goes with the territory of parenting a vulnerable person is overwhelming and all-consuming. Yes, I’ve sometimes been called “emotional” in a derogatory manner, with a clear intention of undermining my credibility, underlining the inherent difference between my role and the role of paid professionals in Toby’s life, and inferring that my status is therefore somewhat inferior. However, I see my emotionality as a strength because it shows how deeply I care. Yes, there is a clear difference in our roles – for you it’s a job and for me it’s my life. Toby and my other children inspire virtually everything that I do and that I am, and it all comes from a source of pure and unconditional love. If I’m a little bit off once in a while, please be patient with me and don’t take it personally, and best of all, if you can, please make it easy for me to talk about it if that’s what I really need to do.
8. When things work well between you and me, it’s no longer about “them and us”, but about “us and us”. It’s great if we are all on the same side and to be able to acknowledge that we are. 
9. Please don’t tell me what you think I want to hear, I want to know the whole truth, even if it’s not always easy to listen to. I know Toby better than anyone and most times I can work out when staff are not telling me the whole truth, and it fractures trust between us even if I sense it’s being done to protect my feelings. Sometimes professional staff haven’t told me about things that have gone wrong, or mistakes that have happened. It’s sad to think they might be scared of my reaction to hearing that errors have been made. If only they knew that I’ve made more mistakes in caring for Toby than anyone else could possibly have done, and that each time I’ve got it wrong I’ve learnt far more than from the hundreds of times I’ve got it right. Making mistakes is human, and it happens. Most parents are realistic enough to know that things can and do go pear-shaped sometimes, but please don’t try and hide it from them. Be honest, explain how it happened and how you’ll now make sure that it is highly unlikely to ever happen again. Sharing what went wrong with each other as well as what went right strengthens all of us, and helps us all to learn how to care for Toby even better. 
10. Please treat me as an equal. I may not have the formal paper qualifications to prove it, but I am qualified by experience in my knowledge and expertise on who Toby is, how to care for him, and what keeps him safe and happy. Please acknowledge my insights, knowledge and understanding. It’s very hard to foster great relationships with people who care for my son whilst undermining his and my shared background and history.
11. Our relationship is all about Toby, and it will be grounded in the quality of care you are able to extend towards him. Sometimes, in our 21^st century bureaucracy I know that you may have so many policies and procedures to follow, additional protocols to adhere to, an organisational culture to fit into and tick boxes and spreadsheet lines to record information onto. Sometimes that means that the people who should be at the very heart of care get a little bit lost, and people like Toby end up being overshadowed by the administration that you are expected to complete. Please don’t let that happen. Please also forgive me if I gently point out that from the outside paperwork seems to be taking an undeserved priority. Where Toby lives now, the staff have to complete every bit as much paperwork as any other care-based organisation, but their first question every day is “How can we make Toby happy today?” It’s not rocket science, and that is really what it should be all about, but if paperwork is neglected it’s obvious whereas if Toby ends up neglected, he has no voice to tell anyone. Please don’t let that happen on your watch. 
12. Please don’t wait until something difficult has happened before you talk to me. I’d love to hear about all the good things that have happened too. That’s how relationships get built and trust develops. Where Toby lives most weeks I get a completely unexpected email with photos of Toby having fun and with a great big smile on his face. The staff simply understand how reassuring it is that they share the parts of Toby’s life that I don’t normally get to see. Here are just some of those photos. 
    
13. What else can you talk about to a parent? Well, think of us as being colleagues, and then think about what you talk about to the rest of your team. We are people too. We can chat about the weather, the likely football results, the silly thing that happened to you on the way to work this morning and whatever was on TV last night. Find common ground and start talking. There is always some common ground, and when people find it together it can strengthen relationships. 
14. Finding common ground is bonding, it’s connecting, and it goes against everything we’re told in our culture about keeping a “professional distance”. When you’re working with someone who is a cherished part of someone else’s family, and you’re likely to be working with them for a very long time, bringing down those artificial and outdated barriers of “professional distance” is essential. As is giving something of yourself sometimes. Don’t be afraid to talk about what you did at the weekend or endearing little anecdotes about your own children. It’s this sort of connection which makes the world go around. 
15. Building a great relationship between staff and family is all about working together to provide the very best of care for someone like Toby. However, it works so well for everyone else too. The more you understand about Toby, the easier your job will become, and the greater work satisfaction you will get out of it. If you and I have a good rapport, stress levels are reduced on all sides, it makes everything much more pleasant and happy, and there is already a good level of trust and respect in place should we ever need to sit down and discuss the more difficult and challenging issues.

Toby’s experiences of Good and Bad Care

Toby left home 3 years ago, and he now lives in a wonderful Residential Care Home where staff couldn’t have made me feel more welcome and more confident about the way they look after Toby. They consistently amaze my whole family with the way they go the extra mile time and again for him.  Toby has great relationships with each of them and watching him and the staff together it’s more like they are all old mates chilling out and simply enjoying each other’s company than care home staff with a service-user.  They ring me for my ideas, they make me a cuppa when I go and visit and they ask for my opinions on everything. I feel like a valued part of the main team and Toby truly couldn’t be happier or better looked after.

However, it wasn’t always like this. When Toby first left home, he was in a different care home that simply didn’t understand what the word “care” meant. In the year that he was there he sustained two broken bones and a serious scalding, all due to neglect. He was so poorly understood by care workers that he became desperately unhappy and his behaviour deteriorated so that it was almost off the scale.

The individual care workers in the original home were mostly very lovely, kind and caring people, but the overall culture of the place defeated them in every direction they tried to take. There was no concept of teamwork, there was a strong culture of blame, and there was very little support in terms of staff well-being or training. Nobody wanted to know what his family thought, and any information we tried to volunteer was disregarded and ignored.

Things went from bad to worse, and Toby became progressively more distressed to the point where it became essential to urgently find somewhere else for him to live. However, his behaviour was by now so challenging that most other local residential care facilities wouldn’t even consider taking him on.

Then, out of nowhere we struck pure gold. A residential care home less than a mile away from our house where they actually understand what the word “care” means. Within three weeks, they had turned his behaviour around completely. Not with restraint or with coercion, but with kindness, patience, ingenuity and lots of laughter.

Toby might not be able to talk, but he understands better than anyone the difference between good and bad care, and how, underpinning everything is the trust and friendship the staff have developed with Toby himself as well as his family.

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