From Little Acorns

One of the strangest things for me about writing a blog (perhaps because I’m still fairly new to it) is that while it almost feels as if I’m writing a letter, you have no idea who you’re sending that letter to.

Someone asked me recently if I have someone in my mind when I’m writing, who the “typical reader” of my blog is and the answer is no. From the feedback I’ve received I’ve realised that they are all sorts of people. Yes, some of them are involved in disability in some way, but a lot aren’t. In fact I find the variety of my reader base fascinating and it keeps me on my toes, stops me from being complacent. It reminds me that I can’t get away with just writing letters to myself!

In spite of this I have never really imagined that anyone with any degree of “power” would be reading my blog. To put it bluntly, I thought they had better things to do. But apparently, someone, somewhere who has the power to make change for the better is reading my blog. I think that is excellent news.

On Friday 21 August I wrote “Holes in the Net” https://justicefornico.org/2015/08/21/a-week-of-blogs-holes-in-the-net/ and on Monday 24 August I received an invitation from the CQC to meet with them. More correctly I received an email from Andrea Sutcliffe’s PA, (Chief Inspector of Adult Social Care) inviting me to meet with Andrea Sutcliffe and the CQC’s Head of Policy Frances Smethurst.

“Well, blow me down, I didn’t see that one coming” is what I thought (feel free to slightly adjust that statement so it uses language more typical to me if you prefer).

Andrea Sutcliffe is a very busy woman. Unsurprisingly. She therefore can’t meet me until October and the only date we all had free was 29 October, so that’s when we’ll be meeting. I’m really pleased to have this opportunity to see her and talk with her, though I suspect my real role in the meeting will be to listen and learn.

I don’t think for one moment that they’re going to turn round to me and say “because of your blog we’ve decided to completely change our policy and from now on we’ll be inspecting every supported living home”. The reality is that this will be at best, the first in a series of meetings as she tries to get to grips with this terrible gap in the law. Right now no-one is going to want to make any kind of changes to what the CQC can do and where they can inspect if it’s going to cost more money (which I suspect it would), but I’m still hoping that we’ll be able to have a acknowledging this need for change and talk together about some viable possibilities for how it could happen.

Worst case scenario is that this is just a PR exercise designed to keep me quiet and them looking as if they are the good guys. But really, I don’t think it is this at all.

So I’m going to go to see them. I’m going to listen to what they have to say and I’ll take lots of notes. I’m sure I have a very great deal to learn. As I have to now presume that someone at the CQC will be reading this, they’ll know in advance now exactly what I’m hoping for from this meeting!

I don’t want to hope for too much, but I know that between now and the end of October, there will be supported living homes in which very bad things are happening and people in them desperately in need of help. So ultimately that’s why I’m going.

As they say, “mighty oaks from little acorns grow”.

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Learning to swim

In the past three years I’ve just been treading water, but now I feel as if I’m learning to swim.

Writing “a week of blogs” has been very hard, not just in terms of the actual sitting and slogging away, writing them, but also making our story so public and bearing my soul in such a truthful way. That doesn’t come naturally to me. Sharing with strangers isn’t usually my thing. Yet I’ve discovered that the combination of the writing, sharing it and the resulting support I’ve received from so many people – the majority of them total strangers, has been very empowering.

I feel as if I have been underwater, but now I’ve come up and gasped in a great lungful of air and now I can go forward again – which is just as well, as we still have a very long way to go.

I go swimming a couple of times a week. The pool belongs to one of the schools in our village and it’s free. It’s not a public pool so it’s very quiet and often there are only a couple of others and sometimes I’m the only one there. People swim lengths up and down without talking so it’s very quiet, almost silent apart from the small splashy sounds of swimming. On sunny evenings the sunlight streams in through floor to ceiling windows on one side and the light and water dance across the walls and ceiling. I swim slowly. Slow length after slow length and as I dip along in the cool, clean water it gives me time to think. I write whole blogs in my head as I swim and they’re always so much better than they are when I get home afterwards and try to write them down.

As I swam, this is what I was thinking last night.

Three years. It sounds like such a long time. What have I learnt in that time? Actually I’ve learnt a huge amount and I’d like to share some of it with you. This is certainly not everything I’ve learnt and I’m quite certain I’ve a lot more to learn, so perhaps I should say “this is some of what I’ve learnt so far”.

30 things I’ve learnt in the last 3 years

  1. When a death is unexpected it will hit you very, very hard.
  2. It will knock you off your feet and turn your life upside down. It will take you a very long time to recover but you will never be the same person again. .
  3. You will be traumatised by the loss. You will have signs and symptoms of post-traumatic stress. This is normal (i.e. you are not weird you are normal).
  4. If your friends are real friends they’ll stick by you for the long haul. If they don’t stick by you as the years go on, they weren’t the friends you needed and you’re better off without them for this scenario.
  5. You’ll need help.
  6. You’ll need help and you won’t know where to turn for it.
  7. You’ll need help and you won’t know where to turn for it and not knowing where to turn will make you feel as if you’re letting down the person you’ve lost and letting yourself down.
  8. THIS IS NOT TRUE.
  9. If you are still breathing and caring then you’re still fighting. Even on the days when it doesn’t feel as if you have done anything, just the fact that you’re still caring means you’re still fighting.
  10. Don’t expect everyone to care as much as you do and try not to be angry with them because they don’t care.
  11. If you want to be angry with them because they don’t care – go right ahead, they deserve it!
  12. Don’t expect support from your family. You may be one of those people who has a slightly rubbish family. If they support you, fine. If they don’t…………
  13. Try to support your immediate family but remember they are all be in as much pain as you but they’ll all show it differently, in different ways and at different times. This doesn’t mean they aren’t suffering too.
  14. Buy tissues in multi-pack boxes. You will use them all.
  15. As time goes on you’ll realise that as well as the person you’ve lost, you are also mourning for the whole life you had with them, now that it has gone.
  16. You may feel angry and bitter when you realise how much you’ve changed. Try not to be, if you have changed, it’s because you needed to.
  17. Tell people you need help. It’s not a sign of weakness. It’s a sign of strength.
  18. When you find someone who can help – LET THEM HELP. I would like to underline that one twice, but my computer doesn’t have that button, so instead I’ll say that when you find someone (or someone finds you) who can actually help you in your fight for justice and help you deal with your anguish and grief PLEASE let them do it.
  19. Remember, you are also grieving so why on earth would anyone expect you to be grief person, legal expert, self-advocate and general big-brain. You aren’t – they don’t.
  20. Don’t be afraid of being judged. Firstly, most people aren’t even thinking about you anymore, let alone judging you. They lost interest in what was happening to you about 15 months after the death. If anyone is judgemental, that’s all about them, their personal experience, the inside of their head and nothing to do with you.
  21. Do not throw any paperwork to do with the place where your loved one died away, even if it seems unimportant – you can’t always tell what’s going to be important in the future.
  22. Whenever possible – get it in writing. Keep copies. Everything you want to say to them, say it in writing (NOT on the phone). Keep copies in a safe place. Print off emails and keep copies. Then you don’t have to worry about your computer losing them.
  23. Make notes in meetings. Record meetings. Ask first (don’t record in secret or they can later say that anything on that recording can’t be used), they’ll say yes anyway and if they say no, make them give you clear answers as to why.
  24. Oh did I mention – KEEP COPIES
  25. Try to get as much good quality sleep as you can. Sleep, or the lack of it, will become a defining feature of your life.
  26. Try to eat well. Try to keep healthy; you’re going to need your health and your energy. Chocolate is NOT a health food.
  27. If you think you are going to be able to, start a social media account of your justice fight (Twitter, Facebook etc). You may find it hard work but it could lead you to people who can genuinely help and support you. For me, blogging has really helped a lot. It might help you too.
  28. Don’t let everything be about the justice fight. As time goes on make sure you also find a place and space to remember and celebrate the life of the person you’ve lost.
  29. Fighting for justice costs money. More money than you have. You’ll need to create a “fighting fund” even if all it does is pay a good solicitor at the inquest.
  30. “Winning” is largely a concept. What you want, the justice you are fighting for – all of this may change anyway on your justice journey. In the end, you cannot bring back the person you’ve lost and not all wrongs can be righted. Perhaps in the end the best you can fight for is for a lot of people knowing what was done and making sure that it won’t happen again to another family.

When I read this through again in another year, I wonder how much more I will add to it or what parts of it I’ll want to change.

Time to take a deep breathe, jump back in and start swimming.

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A week of blogs “The film of our story”

I don’t want to write a great deal here. I want the film to do the talking.

But before you watch it I want explain the background of this film and why I’ve decided to show it in public now and include it in this week’s blog posts. The film was made by film maker Julian Hendy who runs the charity “A Hundred Families” and was made to be part of the training courses by “Making Families Count”, the new NHS Pilot scheme to train NHS Trusts around the UK to support families better after there’s a sudden and traumatic death in their care.

Nico’s death was traumatic. We are still traumatised. Had Southern Health handled his death differently we might be less traumatised – but they didn’t.

I was asked not to mention the name of the Trust in this film or the name of their CEO Katrina Percy, so the film would have more longevity and could still be used as part of the training programme in years to come; years after Katrina Percy has changed jobs or Southern Health ceased to exist in their current form. Maybe neither of those things will happen but by not mentioning them I also hope that more people watching this film are able to identify with our story.

When I first saw this film I was shocked. Since Nico’s death people had been saying things to me about my appearance, but I think they were trying to be gentle. I knew I had gained a lot of weight, but seeing this film for the first time made me realise how much. I knew I had stopped bothering about my hair and make-up and generally looking like a totally different version of my usual self.   Seeing this made me realise I was just going through the motions but I couldn’t really be bothered anymore. I’m trying harder now.

I’ve called this blog “The film of our story” but that’s not really true. This is just part of our story.

The whole story is that we had a son called Nico and we loved him very much. He died and it felt that no-one cared. On the anniversary of Nico’s death I can think of no more fitting tribute to him, our love for him and our need to fight on for justice in his name than to share this film with you.

A week of blogs “Holes in the net”

We start out in life believing that wrongdoing will be punished and evil destroyed. We know good from bad and we know that if a bad thing happens there are people who will come and deal with it and make everything alright again.

As we grow older that knowledge gets dented. It starts with small deceptions, cruelties which go unpunished and in seeing the cunning and malicious thrive. But still we tell ourselves that if a really awful thing happened there would be a net to catch us, there would be people standing by to ensure that the right thing was done and we wouldn’t be left just to fall.

But what if there were holes in that net?

When a family member dies in care, or in a hospital you expect well-oiled and well used machines will spring into life, investigate and punish. It doesn’t matter who you are, rich or poor, clever or not, there’s an almost 100% chance that someone in your family will either be professionally cared for or be in a hospital at some point in your life, so this is literally something that affects us all.

If you’re worried about what’s going on in the care home or hospital you tell the Quality Care Commission. They may already have the place on their radar and will investigate further and see if it reaches their standards. If it doesn’t – worst case scenario, they may even have to recommend putting it into “Special Measures” or even closing it down. They may even want to involve the police.

So no holes there.

Oh, but there are…………………………………

If your family member is one of the 24,485 young people (thanks to Professor Chris Hatton for the statistic) who live in “Supported Living” it’s unlikely that the Quality Care Commission knows of you or knows the home you live in even exists. That’s exactly what happened to us. https://justicefornico.org/2015/02/25/secrets-and-lies/  After I wrote this blog I invited Andrea Sutcliffe, Chief Inspector of Adult Social Care for the Quality Care Commission to comment and outline their position regarding this problem. I told her I would then put her reply on my blog. So far I only have this email from her:

“I did read your blog when you first published it but will go back again and let you have some thoughts. The scope of our remit in this area is I know a source of concern and frustration for quite a few people.”

Whether it’s the CQC, a big health provider, a hospital or one of the big charities, I think it’s too easy to just throw stones and run away. If you really want change and improvement then you have to engage with them and also that means hearing their point of view – even if you don’t agree. I’d still like to hear more from the CQC’s on this situation because when you’re telling each other your opinions then you then have a conversation and with a conversation there’s possibility of making good changes. But right now nothing has changed since I wrote “Secrets and Lies” and those 24,485 young adults are still falling through the net as far as the CQC are concerned.

This matters because “Supported Living” is increasingly the preferred option for Local Authorities. For young disabled adults who can’t be cared for at home, or who want to live an independent, grown up life with support, supported living really does seem on paper to be the way forward. Everyone gets a personal budget decided by the Local Authority which meets their needs, a few of them share the house together and their personal budgets cover the cost of the support they need.

It should be a simple model which works really well, but the problem is that many of these homes are in fact owned or/and run by large organisations who run care homes throughout the UK. For them it’s very much a business. Like many poorly run businesses, they concentrate on running the business, making the sums add up and turning a profit where they can, rather than developing and sustaining a great product. They forget what really matters most – giving great customer care and satisfaction.

And that is when the problems start. That’s when our young people become the terrible statistics of avoidable death. It’s shocking to think of your son or daughter dying in a place that the Quality Care Commission has never heard of, let alone inspected – but even more shocking is how easily and often it happens.

Of course there’s more than one layer to the net. When a family member dies in care not only do the care providers have to inform the CQC (unless of course the young person died in supported living home, in which case they don’t – hence why the CQC were completely unaware of Nico’s death) but they also have to contact the local Clinical Commissioning Group.

If the Clinical Commissioning Group decide it’s needed they will then put into place something called a SIRI (Serious Incident Requiring Investigation). The purpose of this is to look into what happened and make sure that all aspects of investigating the death have been carried out properly. That the family have been well supported and involved and if necessary, changes are made to the care structure and policy of the care providers to prevent it happening again.

The NHS describes a SIRI like this “Serious incidents requiring investigation in healthcare are rare, but when they do occur, everyone must make sure that there are systematic measures in place to respond to them. These measures must protect patients and ensure that robust investigations are carried out, which result in organisations learning from serious incidents to minimise the risk of the incident happening again.”

So far, so good. But what if there’s a hole in the net?

In our case Oxfordshire CCG didn’t realise what had gone wrong with Nico’s SIRI until they revisited the paperwork ahead of meeting with us to discuss the Independent Investigation into his death.

We are lucky – we are dealing with people who care and who feel it really matters that they do their job well. They understand the meaning of “duty of candour” and the vital importance of transparency and truth. So they told us exactly what had happened and even though it shocked us, we were glad to know. It shocks me how easily this happened and how easily it might have gone undetected. It makes me wonder how many times this happens on a regular basis around the country and how many other parents are unaware that they have fallen through the net.

Southern Health informed Oxfordshire Clinical Commissioning Group that Nico had died and OCCG opened a SIRI. They then wrote to Southern Health requesting additional information and when that information arrived, they scrutinised it and were not happy with what Southern Health had told them. They felt that important information was missing, so they wrote and asked for more information. When Southern Health wrote back with their answer, OCCG still felt they were not satisfied that this answer met their criteria and so refused to sign off and close the SIRI.

However, although they were not happy with the information Southern Health had given them and the SIRI remained open, it was then filed and forgotten about and nothing was followed up.

They have been terribly upset to discover this and even more so when they discovered on meeting us what we had gone through as a result. Had they pressed Southern Health on this and followed up, would things have been different? To be honest, I really doubt it knowing Southern Health’s track record, but as this has only come to light because they are now organising Nico’s independent investigation, we can all see how easily this might never have come to light.

The net which is there to catch families like ours is fragile. Holes appear all too easily. Often they are no-one’s individual fault but if the system put into place to investigate death’s like Nico’s and support families like ours was far more joined up, holes where the joins are meant to be and often aren’t, would be easier to spot. It would be harder for a family to fall through without anyone noticing or for a much loved child to be lost without investigation.

I know that a lot of pain has been caused to individual families when the SIRI and the CQC report decides after investigation that there’s nothing more to be done and their part in the investigation is closed and over. That can be a very, very hard thing to read and to deal with. But harder still for us is knowing that the OCCG and the CQC didn’t even know what had happened to us and to Nico. It’s as if we found ourselves over a huge hole that no-one had seen and we just fell through the net.

And no-one even noticed we had gone.

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A week of blogs “What does good look like?”

In May 2011 I sat very nervously in a room crowded with strangers. Lots of people there knew each other and no-one else on my table spoke to me, they were all too busy catching up with conversations. I didn’t mind. I wasn’t there to chat with anyone, I was there to listen and to learn.

The room was large and we were seated at round tables, ten people per table. We all faced the stage and the speakers. The first speaker gave us some basic figures about PLMD (profound and multiple disabilities) to start us off with and introduced the other speakers. I dutifully wrote it all down. I also wrote down her name – “Beverley Dawkins”. It meant nothing to me at the time. How was I to know that within 18 months I would be going through hell with her at my side?

The main speaker of the day was Professor Jim Mansell. He was a most compelling speaker and hearing him speak that day was something I’ve never forgotten. I took his speech down verbatim and have referenced it many times since, including in the many meetings we had with the staff of the supported living home where Nico died, while we tried to improve the quality of care for him there. I know that Jim Mansell was a beacon for many; a man who has inspired countless people and I am only one person on that list, but one of the things he said on that day has stayed with me ever since.

“Good services cost the same as poor services. Good services are not more expensive, they’re just better”.

If we take a minute to think about that simple statement, it’s a big idea. In these times of austerity cuts, this lion of disability equality told us that it’s not about the money, it’s about how you spend it and understanding why you’re spending it that way.

“Good services are individual and person centred. They treat the family as experts and they focus on the quality of the relationships which the staff have with the person they are supporting. Good services are cost effective. The care package needs to be sustainable by the care provider. Good care begins with good management – its top down.  

It’s not difficult to tell the difference between good, well run services and poor ones. As soon as you walk through the door you’ll know the difference. There are some real give-aways with poor services; staff often don’t seem to know what to do unless they’re told and they spend too much time talking with each other as opposed to talking to the people they’re supporting. If you walk into a home where the staff are chatting to each other while they’re watching the TV and the people they support have just been put in front of the TV too, you know you have a problem.

You find care staff talking about how they support people in their care by doing things to them, not doing things with them and often they don’t even mention the idea that really they are there to enable their clients to do it for themselves. They find it quicker to just do it to them. Even those people with the most complex needs can benefit from personalised services and Local Authorities should focus on improving the range and the quality of care, particularly with adult services. So what does good service look like?” 

To answer this question, Professor Mansell was joined on the stage by James, a young man with PLMD and using an assisted communication device (a computer talker), James made it very clear to all of us what he thought good service and good care looked like.

He said “My needs are complex. I have choice over who supports me. I want to have fun. I want to be safe and secure. I need total support with everything but I want all decisions to include ME. Ask me what I want. I enjoy being with people. I like being part of my local community. This is MY life and you are here to support ME”

The good care James received was achieved in simple, obvious ways. Ways that didn’t cost anything extra and weren’t difficult to arrange. He and his parents are part of the staff selection process so James meets everyone who might be going to support him and has the chance to say whether he likes them or not. If he doesn’t, they’re not used.

His parents are treated not as “those annoying parents” but as experts in the field of James. Any new support workers are shadowed by existing support workers for as long as they think they’re needed. All personal care is tailored to be the way that James has asked it to be. His support is reviewed monthly and James and his parents are part of that review as the management thinks it’s important that no-one gets complacent and that any new changes needed are incorporated into his support.

Lastly, they never talk about James needing “care”. They talk about him needing “support”. A subtle difference, but a very important one as it shows the mind-set that they are there to enable James to have the best life he can, not to just wipe him, feed him and put him in front of the TV while they watch a programme they want to watch. 

I’m lucky. I really do know what good care looks like because Nico spent almost 17 years at Penhurst School (the last 4 in their young adult college style unit) and we were part of something wonderful. All the staff were there for one reason only, to make sure that everyone they supported there had the best, happiest, most fulfilled, interesting and healthiest life possible. The place rang with laughter, friendship and hope. The people who worked there and the people they supported were a group of good friends who enjoyed spending time together. But this could only happen because it was really well managed. Staff were not only well trained, but training was on-going and they were given clear, achievable goals and plenty of management back up. Everyone knew that they were expected to be the best of the best and they were proud of how good they were at their jobs and that their school was flagship for the rest of the UK. Everyone there knew what “good” looked like.

This week I’ve been talking a lot with Yvonne Newbold (via Twitter). She has come so close to being another hard breaking story of the mother who lost her much loved child because he was in the wrong placement with poor quality, misguided care that was harming him. But I’m happy to say that instead she has become a mother who has successfully moved her son into a far better place, where he is now happy and thriving. We’ve also been discussing what “good” looks like and in fact this was the inspiration behind my blog.

After reading Yvonne’s story I wrote to her and said that I thought one of the main differences between her son’s old placement and his new one was that in the old home the staff saw “the job” as working there and running the home. They saw the people they cared for as additional to “the job” and therefore weren’t interested (or didn’t understand they should be) in supporting them on an individual level that made each person feel most happy and safe.

In her son’s new home the staff make the people they support the most important thing. Not the paperwork or the meetings, not the budget or the cleaning or the cooking. Not driving them to their many appointments, but the people they support. They ARE the job.

It sounds so simple and obvious, as many good and true things often do, but it really all begins from excellent management. It’s top down. It begins with a CEO with a clear vision, a love for what they do and a burning desire to do it well, excellent leadership skills and a strong moral compass. That then goes down to the manager of each home and from them to every support worker. It requires understanding of their role; it requires training and re-training, awareness of new innovations, pride in your work and genuine empathy and liking for the people you are there to support.

This is what good looks like.

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A week of blogs “The tale of two families”

Once upon a time there were two families. They both lived in the same county but as it was a big county, they lived far away from each other.   They had never met and each family didn’t know the other existed.

One family lived in a town and the other lived in the country. The mums of the families did really different jobs and the dads of the families did really different jobs too. Their different sets of children were different ages and went to different schools and did different jobs, far away from each other.

But these two families had one thing in common. They both had sons who were disabled. But the two disabled sons were very different to each other too and they went to different schools far away from each other and they never met.

One was tall and handsome with a quick tongue and lots to say. He made people laugh. He liked to laugh too. He was imaginative, he was curious. He loved buses; he loved coaches, and lorries. He could walk and talk, dress and feed himself, take himself to the loo when he wanted to, but he had epilepsy, autism and learning difficulties. When he began to be unhappy and to have problems his family thought that the move would be helpful for him. He would benefit from his time there, develop a good understanding of what he needed for his future happiness and then go forward into a different home and a better life.

The other son was slight and fair. He had athetoid cerebral palsy and couldn’t speak, couldn’t walk, he couldn’t dress himself or go to the loo on his own. He needed lots of help with everyday physical things but he loved to laugh and to make other people laugh. He was very loving and very loved by his many friends and his family. He loved adventures. He filled the room with his bright personality, adored music and art and was kind and sensitive. He was happy and safe where he lived but he was forced to leave the home he loved against his and his families wishes and live in a place where he was unhappy and unsafe.

Then both sons died in places that used to be run by Ridgeway Trust and were taken over by Southern Health. Neither should have died. Both deaths were preventable. The deaths of both sons were dealt with by Southern Health who have treated and continue to treat both families very badly.

Connor died in an “Assessment and Treatment Unit” in Oxford. Nico had died 10 months earlier in a “Supported living home” in a village in South Oxfordshire.

Because the two son’s disabilities were so different and the families lived far from each other, even in death they didn’t know anything about each other. Then, little by little, they found out about each other’s campaigns for justice, their shared sorrow and a burning desire for justice. Without knowing each other, they support each other’s fights for justice.

Our families have never met and perhaps they never will. In almost every single way their stories are quite different, but they are only two sides of the same fight, the fight to make sure that our young disabled people are valued and treated with the respect and care which their families hold them in. That in life and in death they are treated as if our society values them and holds their lives to be important. That the wishes of our young people are heard and acted on, rather than ignored. That the families of our young people are judged to be knowledgeable experts whose views are placed at the front and centre of all care given to our young people. That no more young people are forced to live where they don’t want to be and that they are given the support to lead the best, most fulfilling and happiest lives possible.

Here is the story of one of those families. It is the tale of the tall and handsome boy who liked to laugh.

A week of blogs “Smiley Face”

My friend and colleague from “Making Families Count”, Frank Mullane (of AAFDA) has shared his own personal experiences of dealing with grief in the workplace with me and given me permission to use it in this blog.

“I can recall walking through the corridors at work wondering why people were not coming up to me and hugging me.

They were busy walking to meetings to talk about interest rates or some other trivia. I knew of course that many of these people had no idea what had happened to me but I found it so difficult to cope with the coldness even though it was not intended. Even if they had known, it didn’t mean I was owed their compassion. And they would have their own worries too. I got all of that, but it was difficult to balance profound grief with being in an ordinary work environment in which I would be expected not to show this hurt. As a result, I often felt silenced at work and my blood often ran cold at the unemotional environment.

Luckily I met some great people too who had time to just be there and witness the profundity of the effects of double murder”.

But for me it’s different again. I have a job where I spend hours and hours alone at a computer and then hours and hours surrounded by people. It’s a job where I have to “perform” and I must have a super-smiley face, full of energy, commitment, confidence and dynamics. Most of the people around me are neither friends nor colleagues; they have paid to be in the room with me. I cannot possibly consider sharing my inner turmoil and grief with them. It would be completely inappropriate. So I keep up the smiley face and I don’t put myself in the position of discovering that they are neither concerned about me or understand why after all this time, I would still be grieving for the loss of my child.

Last night I was talking to my daughter about how the week of blogs was going and she asked me if I was taking requests. Normally not, but for her of course the answer is yes. So my daughter would like to share this with you (with some additions from me).

“I’d like to talk about how hard it is for those of us who have to go out to work every day, whatever day of the year it is and we have to keep our smiley faces on. It doesn’t matter how awful I’m feeling, how low or how tearful, I can’t be that person when I’m at work. It isn’t fair to my colleagues or my customers, it isn’t professional, but it’s also so very hard knowing that I can’t share what I’m going through, I can’t share my feelings with people at work or let them see how the real me is feeling inside.

I’m not saying that no-one I work with cares, I think that most of them do care, but the problem is that they don’t understand. If they think something is wrong with me and they ask me what it is, even if I tell them it’s the anniversary of my brother’s death on Saturday, they won’t understand what that means for me.

Perhaps unless you’ve been through something like this you just can’t understand, but that doesn’t make it any easier for me. I have to be super professional, smiley, smiley helpful lady every day. No-one wants to see my sad face – it really isn’t part of the job.

But it’s so hard and it isn’t just hard at this time of year, or around Nico’s birthday. Bad days can be random. Maybe it’s something you see or something you hear, a smell, a sound or just the way you’re feeling that day, but some days you just want to cry and feel so low and you can’t let that show.

I know that if I do have to tell people what’s wrong or what’s going on with me I can tell that they’re thinking “she should be better by now” and I know that most people are expected me to be feeling fine again after 6 months, and are shocked that you aren’t, as if this is something you just “get over”. I know it’s not just me, I know it’s the same for most everyone who has a job – whatever that job is, and they have the same problems.

I don’t know exactly what I want to do on Saturday, but I do know that I don’t want to act like it’s some kind of celebration of Nico’s life – really, it’s the opposite of that.

Why would I want to celebrate a day so terrible, the worst day of my life, a day I’ll never be able to forget as long as I live? This is the one, horrible day that has nothing to do with Nico’s life. I don’t know what is the right thing to do on this day; perhaps there is no “right thing”. I know that I want to be with my family and remember Nico and support and love each other. I want to feel close to him again.”

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A week of blogs “Seeing Clearly”

I hadn’t been to see the opticians for a while. Every time I thought about going, it brought back so many happy memories of taking Nico to see the opticians that I couldn’t bring myself to go.

Nico really liked going to his opticians. They are a lovely, family run firm in Chipping Norton who had been looking after Nico’s eyes since he was 6. They all knew him well and they spoiled him rotten. As soon as we came in through the door they would rush round from behind the desk to say hello and to ask him “Can I give you a kiss hello?” Nico would smile that slow, flirty smile and look up at them from under his eyelashes, knowing they were putty in his hands and signal for “Yes”.

Even the man who actually tested his eyes was full of smiles and jolly for Nico, as if he was their favourite customer and with the help of this lovely man and his family, we had successfully got through many happy years of eye care.

By the time Nico was about 3 we began to notice that when he was very tired he had “eye wobble”. His eyes would sort of flicker from side to side. We asked our doctor about it and she said it was nystagmus and that it was caused by low muscle tone in his eyes. As Nico had low muscle tone everywhere else (athetoid cerebral palsy), it made complete sense to us that he’d have it in his eyes too, but the doctor thought that as he got older, and with good physio, his nystagmus would improve.

Nico had been at Penhurst School for almost a year when the school contacted us to say they wanted to take him to see the same lovely local family opticians who were to care for his eyes for the rest of his life. They wanted to talk to them about his nystagmus. After examining his eyes the optician thought that Nico would benefit from exercises to strengthen his eye muscles and probably from glasses when using a computer. So the school worked hard on creating more “eye pointing” exercises for Nico, which he would use in the classroom and with his communication devices. These both strengthened his eye muscles and helped him with his communication and he continued to wear his glasses for close work. His nystagmus got much better and within a couple of years had disappeared.

Nico continued to wear glasses for reading, computer work and any other “close work” and through the years we got through an increasingly funky and attractive selection of glasses which were always kept in the bag on the back of his chair, so that the carers and teachers working with him could quickly ask if he wanted to wear his glasses, and then put them on.

At least two years ago I knew I needed to get my glasses prescription updated. I’d had my reading glasses since 2005 and I felt they weren’t really cutting it any longer. But, dreading a return to the opticians without Nico, I just kept putting it off. At the start of the year I was finding started to find it harder to read at all and by May I was no longer able to read some blogs and websites at all. Books were getting harder, maps impossible and even daylight was starting to be tricky stuff. I mentioned how misty the weather had got to the MN and he agreed it was. But deep down I knew something wasn’t quite right and I had to have new glasses as soon as possible.

Last week I went to see the optometrist in our local town. I expected to be there about 30 minutes. I was there for over 2 hours and in that time my poor little eyes were subjected to such a battery of prodding, poking, drops, light shining and tests that I didn’t even know existed (they tickled my eyes – yes tickled!). After an hour and a half I already knew something wasn’t right and I just sat there thinking “I hope it’s not glaucoma, I hope it’s not cancer”. It wasn’t.

It was advanced, early onset cataracts.  I have a condition which they normally see in people over 80 and they’re amazed I have it, but I do.

They’re going to make some special glasses for me to wear for close work until I have my first operation but I won’t get those for a couple of weeks. In the meantime I have to wear dark glasses outside and limit my computer time.

An operation is essential to save my sight and they will operate on one eye at a time as it’s not without risk and they’ll start with my right eye, the eye I can hardly see out of, which the optometrist described as “decoration only”.  As I’m classed as urgent the operation will be within 6 months. Then a few months after they’ll do the other eye.  They’re going to insert special discs to hold back (hopefully) the return growth of more cataracts, but they say it’s possible.

Did I mention the eyepatch? Immediately after the operation I’ll have several weeks of wearing a particularly sexy eye patch. I’m already thinking of how I can “pimp my patch”. I’ll need to as I’m not allowed make up, swimming, showers, going on public transport unaccompanied……..the list is long and it’s all very tedious stuff. But at least I know that with luck, in a year the world is going to look like a whole different, brightly coloured and clear edged version of itself.

After Nico was forced to leave Penhurst for Barrantynes we noticed that his glasses would often not be in his bag when he came home. We asked the staff about it. Some said they didn’t know he wore glasses, they hadn’t read his notes. Some said they didn’t think he needed them. Some cared and remembered to put them on him, some even remembered to ask him first if he would like to wear them. But not many.

After a year we found them smudged, dirty and discarded on his bookshelf. We spoke to the manager about this, but he just shrugged. Were we sure Nico needed to wear them? It didn’t matter what we said, no-one seemed to put any kind of importance into Nico wearing his own glasses and it just became another on-going battle which we were never going to win because we couldn’t make anyone upset enough about the fact that Nico couldn’t see properly.

I have his glasses now. They are safe, clean and in his room. His doesn’t need them anymore, but I need them and I need him to know I have them, that they are safe and that they are important again.

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A week of Blogs – “Cunning” (a poem)

Grief is cunning

It slides in slyly

Leaving you longing for the mundane

Small trousers blowing on the line

The telephone call at inconvenient time

Leaking bottles of Osmolite

Getting up endlessly in the night

Pretending to love robots too

Not having time to go to the loo

The songs you loved

We had to play

Over and over

Day after day

Driving fast

And so many laughs……..

You loved to laugh

And I laughed too

But that was then

When I had you

In the simple time

Before I knew

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A week of blogs – Introduction

On 22 August is will be the anniversary of Nico’s death. Another anniversary.

Another year come and gone and we are still riding on the justice train, a train which has stalled, broken down completely and on some occasions, reversed.  It has needed a huge amount of urging, feeding and maintenance just to get this far.

I am finding this week ever so hard. I feel as if I can’t breathe properly and find myself wandering around the house as if searching for some task so meaningful that it will at least temporarily take my mind off this week.

So I have decided to do “A week of Blogs”.

A week in which I will blog at least twice a day or even more, every single day about what this week, this countdown to 22 August means to me. I will fill this week up with my Nico blogs in the hope is that it will get me through.

Please join me in my week of blogs – by reading them and by commenting too so that your words also become part of Nico’s “A week of blogs”.

I need something extra to get me through the week and it’s not going to get any easier. This year I swore that I would start making Nico’s birthday the day that we remember him, not this other horrible date, but still the pain is here again.

I miss you Nico.

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