It’s G’s Birthday today. He’s 25 years old. It hardly seems possible that he can be 25 years old.

He came to stay with me yesterday. I like him to wake up here on his special day and so far, despite him living in his own home for the last almost 6 years (and being in residential school before that for 3 years) I’ve always managed to arrange for him to be here. G likes waking up here on his Birthday too and just like when I blogged about his Birthday 3 years ago, today he woke up excited at 4.30am.

He knew it was his Birthday and wanted to make sure I’d remembered too. He wanted his presents, which always includes chocolate and he wanted it now! I managed to distract him on the chocolate front with a DVD until we got up for breakfast at least. We had a lovely morning together, watched his new DVD’s, ate chocolate and shared the Birthday love on Facebook. IMG_1458 Then I took him home (with Chocolate Birthday cake) to open presents from his housemates, a chocolate hamper from his Grandma and Grandad and big fuss from the staff! – And then I came home and had a kip on the sofa. I really can’t do 4.30am starts anymore!

This time of year now though also has another anniversary and on Thursday 21st of May it will be 2 years since Bob died. How can that be possible?!? It’s kind of tinged the G Birthday thing for me…I really hope that won’t last and I won’t always feel this way. I’ve done the ‘this time two years ago’ thing more time than I care to think about this last few weeks… I guess that’s inevitable. Two years ago Bob was here with me celebrating G’s Birthday and now he isn’t. Facebook Time-hop reminded me of that today, not that I needed reminding. I think I might delete Time hop!

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Decluttering, chargers and memories

I’m trying to sell my house. It’s a lovely house. It needs some work to be fair but it’s priced (I think and hope) to reflect that. It’s been my family home for almost 22 years and I love it. So many happy memories of our life here, but that doesn’t sell a house does it!

Trying to sell your house is a great way to focus on the whole decluttering gig. So, I’ve been decluttering. Decluttering and cleaning and buying flowers and buying air fresheners… and cleaning….and cleaning! Well, to be honest not as much decluttering as I should have….shoving stuff in cupboards and hiding other stuff under throws, but you get the gist.

It’s really not me at all. I’ve always maintained that…IMG_1410

I’m a massive hoarder too! Always have been…probably always will be, but if I want to sell this place and move somewhere smaller I need to get rid of some crap!

I’ve had my moments of decluttering. A few years ago I decided to clear out the under-stairs cupboard. I found baby clothes. Not even nice baby clothes that I’d saved for the memories but, crappy little baby grows that no one would want and you wouldn’t want to see a baby in. I found four old handbags and two old coats I’d forgotten I’d ever owned. Bob told his friends and workmates that I’d also found Lord Lucan and Shergar….cheeky sod!!

I started to try and sell my house in September last year and now its Spring. The sun shines. The windows look dirty. Everything looks dustier!…the term Spring cleaning happened for a reason!

I bought a window vacuum (to put the fun back in window cleaning…er hum!) but lost the charger. I found loads of chargers, for old phones and other devices but not the one I wanted…typical. I ordered a new one on amazon and then just an hour before it was delivered I found the old one (under G’s bed…how it got there is beyond me.)….so now I have a spare…it’s all good!

I also found a load of old 8 mil video tapes for the old video recorder, but couldn’t find the charger for that either. Searched high and low to no avail. The good thing about being a hoarder is that I knew there was absolutely no chance that I’d thrown it away so it must be here somewhere. It eventually turned up in a drawer in bedroom…put there for safe keeping obviously!

So, I’ve spent the last few evenings looking at old video tapes.

So emotional!

Watching the kids as kids. Family holidays. Family visits.  School plays, sports days and kids club trips out. ‘Plays’ in the garden. Dramas in the house. The re-enactment of Harry Potter and the Chamber of Secrets – a major highlight!

There is something about seeing people on video, hearing their voices. It’s pretty special. G’s laugh… a prepubescent girly giggle as opposed to the manly guffaw he has now. The squeaky, high pitched voices of a four/five year old. You can look at photographs and remember how they looked but you do forget how they sounded. It was good to hear again and made me smile. G enjoyed watching them at the weekend too!

And then there was Bob!  Alive. Full of life. Being Bob.

Seeing him is like having him back for a moment. As I’m typing this I’m crying but when I watched I just smiled. It was good! We had it good. I was very lucky and I have to keep reminding myself of that.

So, now since starting to write this post I’ve had an offer on the house that I’ve accepted. It’s early days so I’m not getting too excited. We all know how these things can go ‘belly up’, but I’m feeling hopeful.

It’s also feeling a bit real and there are mixed emotions. It’s going to be really hard to leave here.

It’s almost two years (how can that be possible?) since Bob died. I do miss the grumpy old bastard! Life isn’t the same without him.  I wish I’d filmed more. I wish I’d taken more photographs and filmed more….there was so much more!

I’ll take that with me though…that and the video tapes, the camera and the charger… and the memories. So many memories!

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Family Champions & Cake

Since January this year we (OxFSN) have been running a course for family carers of children and adults with learning disabilities. The course was called ‘Creating Family Champions’ and the aim was to work with families to help them better understand person centred thinking, planning and approaches, as well as the new legislation -The Children and Families Act and The Care Act 2014.

The course has been funded by the European Social Fund (ESF) and it’s our first accredited course with the Open College Network. A big thing for us as a small charity and an overview of the course is here. We were also incredibly lucky to have the support of a local Community Care Lawyer, Cathy Score who provided a great insight into the new legislation and delivered this in two of our sessions.

I love working with other family carers and it was great to see a range of family members with relatives of all ages attend the course. Some had done some person centred planning before but for the majority it was their first real insight… let’s just say they all ‘got it’ – families usually do!

Family champions 1

One of family champions 5our other aims (hence the name of the course) was to inspire and encourage family carers to join us and increase our capacity, something we’ve always struggled with, as many user led charities like ours often do. Even before the course finished we heard from participants what they were doing to spread the person centred ‘virus’….go out and infect we said and they did!

One mum delivered a talk on one page profiles, shared her experiences and what she’d learned in the course and showed this film to her son’s school. Another, used and shared what she’d learned to support other parents to fill in the ‘all about me’ section in the new Education, Health and Care plan (with help from our new guidance – available on our website soon

family champions 3

At the end of the course and as part of their homework, everyone was asked to do a one page profile for themselves and/or their relative. It was fantastic to see the quality of what they produced.

family champions 2

However, this email from one of the parents who attended the course kind of sums up the benefits of person centred approaches and the difference it can make to families…

“I think you have given me back my little boy. Person centred planning has just freed me to get on with being a parent who loves and cares for their child. 

 What’s more my husband really gets it! He is utterly mystified by ‘services’ health, education and social care – being the main breadwinner he’s not often dealt with the minutiae of forms, reports, meetings, assessments that I have become so immersed in over the years – veering between ; compliance (we need the money/service), rage (bloody hell why can’t they even get T’s name right) to despair ( I will never be free of all this – I can’t die because no-one else will be able to deal with all this admin… but I might as well as all I ever do is admin). However, person centred planning made sense to him in seconds (I think he now doesn’t get why the whole world doesn’t do it all the time, everywhere).

 This means that our family is stronger – all able to pull in the same direction. In terms of services/interventions/offers of kindly meant inappropriate help –  I can now step over them, steer around them and just ignore the stuff T doesn’t want or need and really feel confident that it is the right thing to do. But, I can say actually what he’d really like is … this.

So we have a plan which this weekend to sit around the kitchen table with lots of snacks and drinks – all 5 of us – and start getting on paper T’s plan.

For me, well… job satisfaction doesn’t get any better than this. To celebrate our last session, courtesy of a future family champion….. we had cake… and it was delicious!! 


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Saying Sorry

I had an amazing weekend with some good friends recently. They brought their kids with them. Gorgeous little kids they were too!

I love having kids in the house, it’s been a long time. And, another bonus to having G is that there are still toys in the house that appeal to 3-8 year olds. Consequently, they made themselves at home very quickly…leaving us adults to relax and enjoy ourselves too.

Like most children of this age there is always going to be the occasional disagreement, and there was!

H, aged 8. O, aged 4 and J, aged almost 3 all got on really well! Until little J accidently hit O with a sword (toy one…obviously). Because he’s a good parent, J’s Daddy made him apologise.

LESSON 1: It doesn’t matter whether you meant to hurt someone or not and if it was an accident. You apologise. End of!

Next day…

Little J, (bit tired, bit excited!) whacked O with the Sword and hurt him (not so much of an accident we think but the Jury is still out!). Daddy…removed sword from little J. Told him to apologise. Explaining that he’d hurt O and he needs to say sorry. Little J, being only almost 3 didn’t really understand the consequences of his actions…he just wanted his sword back and he wanted to play with H and O again.

H, was very annoyed. His little brother had been hurt and he didn’t like that. O wasn’t sure either.

Daddy made J apologise again. And he did. A real heartfelt apology (through sobs). But, as a 3 year old all he could reasonably understand was that he’d said sorry and now he wanted to play with them again. H&O didn’t quite feel the same. They didn’t want to play with him anymore and that was that!

LESSON 2: Sometimes saying sorry can never make things okay but you still have to say sorry and mean it. When you do something that hurts someone you have to accept the consequences of your actions and learn from it. Hopefully little J won’t hit anyone with a sword again and remember what happened when he did. A tough but important lesson for a 3 year old and probably one that will take longer to learn.

As adults we have no excuse not to apologise. If we get things wrong we need to say sorry. So why is this so hard? I started to think about my own experiences…

While I’ve lost touch with a number of friends over the years I’ve only ever fallen out with two as an adult.

The first was around 10 years ago. She did something that really hurt me and I found hard to forgive her for it. When she apologised (a week later) she then made excuses as to why she’d done what she’d done and how I needed to understand how my perceived actions had made her feel. Unfortunately, I’d already ‘stewed’ on what she’d said for a week, going over and over it in my head and was frustrated by the ‘no right to reply’ situation she’d left me in (she’d left a letter and gone on holiday!) by the time the apology came I was beyond livid. N.B. We’re friends again now but our relationship was scarred and will never be quite what it was (see lesson 2)

Lessoimages (4)n 3: An apology isn’t an apology if you put a ‘but’ at the end of it. It isn’t an apology if you defend your actions when you are saying sorry…just say sorry!

Lesson 4: When you do something to hurt or upset someone say sorry straight away, don’t leave it too long because the people you’ve hurt or upset just get angrier.

I fell out with another old friend very recently. I felt she’d behaved badly and she didn’t apologise to the person she’d upset (long story and one I won’t share in detail here) I didn’t contact her the next day. I was too angry and thought it was up to her to make contact first. Consequently she’s deleted me (and the person she upset!) from her life (and Facebook) and we haven’t spoken to each other since (Sad, because I thought we were very good friends). Sadly – even if she apologised now it’s too late for me. The damage has been done. (See lesson 4)

Basically, we are not very good at apologising, sincerely apologising, when we’ve made mistakes or upset or hurt someone. We are probably all guilty of trying to defend ourselves when we’ve made mistakes. It’s natural to want to put our version of events forward in an attempt to put things right but the fact is defending yourself after an apology simply diminishes it.

Over the last 20 months I’ve witnessed an object lesson from a provider organisation of how not to work with families. Their apology to the family of Connor Sparrowhawk for his death was forced (through social media and some local and national media exposure of the situation), meaningless, too late and followed by excuses and non-action. To my knowledge Nico Reeds family has never received an apology! (See lesson, 1, 2, 3 & 4 but with special emphasis on 2)

And ….Lesson 5: Sometimes an apology can never be enough!bdb7ba8e7f4f8587e0ec9843cd6b0f0e

From April there is a new Duty of Candour for all care providers.

‘The duty of candour will require all health and adult social care providers registered with CQC to be open with people when things go wrong. The regulations would impose a specific and detailed duty of candour on all providers where any harm to a service user from their care or treatment is above a certain harm-threshold.

The duty of candour will be a legal requirement and CQC will be able to take enforcement action when it finds breaches.

As part of this providers will also be required to apologise – but does it go far enough?

I’m not sure it does. It’s a good start but doesn’t go far enough for me…

Will this legislation change culture?

No, because ultimately cultural change is driven by the values, ethos and commitment of the organisations leaders and by its workforce. It starts with an acceptance that they are not yet good enough and can always do better. It starts with honest, open communication and real partnerships with the people they support and their families. Genuine involvement and real partnership.

It means saying sorry when you get things wrong…even the seemingly little stuff -stuff not stipulated in the Duty of Candour… e.g. “sorry we didn’t reply to your email/telephone message/ letter quickly enough”… “We are very sorry that an error was made in XXX’s medication. We have done the following to ensure this doesn’t happen again”…”We apologise most sincerely…for….(incident) this shouldn’t have happened….we are doing XYZ to make sure it doesn’t happen again and will keep you informed and involved throughout the investigation, please call xxxxx on tel number xxxxxx if you would like to discuss further”

Because, ultimately…. 



and ..


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’16 years old-restrained, handcuffed and detained’ – Why we need the LBBill and we need it NOW!

I met Lisa Perry over a year ago when running a course with Dimensions UK (in partnership with OxFSN) about employing your own staff. Like lots of parents Lisa was looking to the future. Recognising her then 15 year old son, Aidy would probably need a bespoke kind of support package she was interested in how this could work for him and wanted to develop the skills to do it.

I met Aidy once during the course. He came in with his dad before a shopping trip in town (His favourite activity). He was happy, lively and excited to be going to do something he loved.

Lisa came to a couple of our meetings about the peer to peer support project to support families whose loved ones (with learning disabilities) were sectioned under the Mental Health Act. It was obvious to me then that like some of the other parents who attended those meetings Lisa was terrified that Aidy could very well find himself in this situation and she wanted to be armed with the information she’d need if the worst happened.

It did!

This is what has happened so far and the current situation. It is documented here in an email from Lisa. Aidy’s mum.

May – November 2014, Brooklands ATU, Birmingham 

On 30 April 2014 Aidan was sectioned and admitted to Brooklandsan ATU in Birmingham. Initially he reacted to the incidents of other patients (either becoming very excited and trying to get to the other young person, or by displaying aggression himself) and was frequently restrained. (It was written into his Care Plan that being restrained should be a last resort as Aidan reacts very badly to this and it only escalates the situation.)  Medication was changed – Risperidone/Fluoxetine removed, Apripiprazole/Propanolol introduced.

Aidan remained at Brooklands until mid- November when he started at MacIntyre’s Endeavour Academy – a brand new residential school in Barton, Oxford.

November 17th 2014 – January 10th 2015, Endeavour Academy, Oxford 

Aidan Xmas 2014

Aidan, Xmas 2014

Still coming home for weekends, Aidan had a good first few weeks at EA, but behaviours gradually escalated – minor hitting out and non-compliance. We believe that living with others with ASD and possibly the fact that he was mostly confined to school was difficult for him. He had a reasonably settled Christmas at home.  Whilst the school were seeing deterioration in Aidan’s behaviour, EA did not flag this as a concern with us until the morning of his incident – possibly we should have discussed a different approach involving Aidan being given additional support to be taken out more if we had known things were getting difficult. He returned to school on 5/1/15 and over the next couple of days spent very little time out of the residential unit. On 7/1/15 in class, he witnessed another student having a seizure and being taken away by paramedics. Despite appearing uninterested during the procedure, afterwards Aidan had a major incident where he hit many staff and broke a glass door panel and tried to climb through. Possibly Aidan was trying to get to his place of safety – his bedroom, and he was targeting staff who were blocking his “escape route”. Additionally, it seems that during this incident, additional people arrived – the opposite of what we have found works at home.  

The Psychiatrist from LDCAMHS was at the school and approached him during the incident to give him Lorazepam, and she was also hit. She decided to section Aidan again and he remained at the school for 3 nights on Lorazepam. Aidan’s weekly schedule was set a week in advance. This included being at home Friday-Sunday. After this was denied on the Friday night, his anxieties with the change of plan built up so much that on the morning of Saturday 10th January 2015 Aidan became very agitated. The police were called and Aidan restrained. In handcuffs and leg restraints he was taken to the Vaughan Thomas adult ward at the Warneford Hospital.

Aidan has again been sectioned under the MHA and is currently in the High Dependency Ward of the Highfield Adolescent Unit on the Warneford Hospital site in Oxford. (N.B. this is not a specialist LD unit)

“During this time he was supported by staff employed by the Highfield unit and did not mix with adults. Unfortunately, this meant he was kept in a very small area and when he asked to leave and this was denied, he pulled an emergency exit sign above the door off. Alarms went off and he was again restrained. At 4pm on Monday he was transferred to the Highfield Unit.”

 Aidan has been reasonably calm on the Highfield Unit but is understandably distressed at being detained. He is doing a lot of pacing around the unit and we believe his confinement is escalating his anxiety. There have been a few incidents where Aidan has shown aggression towards staff, possibly exacerbated because he has asked to come home and has not been allowed to. Aidan is not typically violent, and is a very happy boy if his needs are being met. This involves him having a high level of control over his activities, going where he wants, and over his environment. Whilst these needs are sometimes difficult to meet, this does not warrant sectioning him in a psychiatric unit. This is not his solution.

There are currently no learning disabled mental health psychiatric beds available in the country. Aidan is being assessed for the Ferndene Unit in Northumberland on 21st January. He is also being assessed by St Andrews in Northamptonshire on 30th January (he has already been assessed by one doctor from St Andrews).

 Bill Mumford, CEO MacIntyre (MacIntyre Endeavour Academy is Aidan’s school), is involved as are other members of the Macintyre staff. Bill is pulling together a team which will hopefully involve Oxfordshire’s LDCAMHS, Social Services and the Psychiatrist used by Improving Lives to explore possible solutions for Aidan. The solution probably doesn’t yet exist, but Bill hypothesized it would be a bespoke, local solution with long-term support. Over the last year it has been well proven that a unit with other autistic peers (maybe having their own incidents) is not a possibility for Aidy. It is apparent that his needs are unique and complex and we are hopeful in adulthood, he will have his own place and his own team. He does enjoy the company of adults and is very sociable. He enjoys going out in and around Oxford and has many people who are familiar to him here.

Whilst we realise that under the MHA there are restrictions to where Aidan can be, we want to keep him as close to us as possible. We are taking legal advice on our rights and what we can challenge. He spent 6 months last summer at Brooklands Adolescent Psychiatric Unit in Birmingham, and we do not think it is in his best interests to go into another similar unit. He needs to be in an environment where his experiences are closely controlled – certainly not one where he will be subjected to others having frequent incidents/restraints – but where these incidents can be minimised. Although I know both units coming to assess Aidan have an excellent reputation, we are hoping Oxford can utilise their expertise, to support Aidan at home and school with local psychiatric help. With regards to Northumberland, apart from the logistics of visiting him (it’s five and a half hours drive one way), we have huge concerns regarding rehabilitation of Aidan back to Oxford. We believe, as does Bill Mumford, that his placement needs to be connected to where the ultimate solution is going to be. Possibly school could support him more flexibly. (For example, could MacIntyre No Limits be utilised to possibly take him out and about in the afternoons? He finds staying in one place very difficult.)

We – his parents, his extended family, friends, and Endeavour Academy staff are important to Aidan. He is asking to come home or to go to school, and it’s important to him to remain close to us all to help him keep a sense of hope and perspective on what’s going on in his life currently. Also we are strong advocates for Aidan as he is unable to make his wishes clear. We know the best ways to communicate with him and what works to support him appropriately. We are able to identify immediately if, for example, a change in medication were to cause a side effect (as we did last year when he developed tremors). How could we possibly be expected to do this if Aidy was so far away? Aidan also has two sisters who are devoted to him, and want him home. We need to support our girls too and this would be very difficult if Aidan was several hundred miles away.

 We are hoping that Aidan will be allowed leave on a Section 17 soon to reduce his anxiety, and so everyone can assess how he is in his familiar surroundings. We believe that if he is happy at home and we can support him here, this further supports the case against him spending the next few months in a psychiatric unit. We are grateful to Bill Mumford and Brenda Mullen from MacIntyre for their immediate response to Aidan’s situation and look forward to meeting with many of you to discuss Aidan’s support in Oxford very soon.”

An update on Aidan and us: sent today 22/01/15

‘I believe everyone involved in Aidan’s care, (which include: Us – Aidan’s parents, Dr at LDCAMHS, Dr from the Highfield Adolescent Unit, and professional from Childrens’ Continuing Care, Oxfordshire County Council’s Disabled Children’s Manager, and Aidan’s Social Worker, OCC SEN lead, MacIntyre (who have reinforced their commitment to setting up something bespoke locally for Aidan including housing) and Hazel Watson, Mental Health and Learning Disabilities Lead for NHS England. Hazel also heads the Improving Lives initiative. Her staff have been informed and are willing and ready to advise on Aidan’s situation. All are agreed that in the long term, Aidan needs this bespoke, long-term, local arrangement to be set up by Oxford. However it could take a long time to set up – likely to be months.

We, Steve and I, are very keen for Oxford to be moving along with his solution. However all professionals and managers are waiting until they have the assessment feedback from St Andrews before they start working towards Aidan’s discharge planning, once it is clearer what treatment/care he should be receiving on a longer term basis ie. after the Highfield. Our concern is that we are being pushed into an ATU stay for Aidan as a “holding pen” whilst his bespoke solution is prepared. Aidan is doing well in the HDU at the Highfield as there are low demands on him and we have spoken with Dr (from Unit) regarding taking him out around the Warneford site and eventually leading up to Section 17 home leave. In an ideal world, we would like him to remain at the Highfield with section 17 leave until his local support placement is ready. We are worried that entering another ATU where high demands are placed on him and exposure to other young people similar to himself will be extremely detrimental and not in Aidan’s best interests. While Dr (at Unit) is supportive of Aidan’s care remaining local, he is expressing concern because Aidan is occupying the whole of the HDU because there may be difficulties arising from him sharing the space with another young person with their own difficulties. So he is  ‘bed-blocking’ (not Dr at Unit’s words!)  We are challenging what value additional months at an ATU will give us and Aidan (other than a holding pen)?

 The Family are currently seeking legal advice about the following. If anyone reading this can help please, please, please get in touch

  •  What rights do they have regarding Aidan’s transfer to an ATU versus his staying at the Highfield?  It could be argued that the Highfield is not an autism specialist centre, but Aidan has already been at many autism-specific placements, but what he needs now is the correct environment, with careful exposure to things that he enjoys whilst his long term solution is arranged. Whilst they are aware that this may be an unpopular/inappropriate use of the HDU at the Highfield, they believe it has been done before and Aidan surely has the same rights as any other unwell young person from Oxford.
  • How likely are they to win a challenge to his section 3? This will depend on whether his psychiatrists deem him to be dangerous. They argue that given the right environment and support, Aidan is typically contented (albeit very demanding and hard work). They are also willing to keep him at home although this will be difficult long term unless his support package kicks in soon.

My questions and comments:

  • It’s clear that Aidy reacts badly to other young people similar to himself, with their own difficulties so why was he sent to such a place in the first place? why wasn’t a bespoke package of support the first option when it was clear to those who knew him this was the only thing that would work for him?
  • Why were the family not informed of escalating behaviour when they could have possibly helped? Another demonstration of not listening to families, who know their loved one best.
  • Why were the things important to Aidy ignored (being confined and not getting out and about, his weekly routine and going home on Fridays, not having additional people in the room when he gets upset’)
  • How can it be right to restrain, handcuff, leg cuff a child of 16 years old with learning disabilities – a kid who wouldn’t understand what was happening to him and who was already obviously distressed and when it was made clear by the family that this only exacerbated his anxiety and escalated his behaviour?
  • What good can come of being sent to an ATU hundreds of miles away from home? If Aidy is safe and currently doing okay at the unit he is in (albeit a holding pen) why move him to another unit and distress him even more?
  • Aidy wants to come home, his family want him home. Everyone involved in his care believe home with a bespoke package of support around him home would be the best place for him. This is a matter of urgency why is it assumed it will take months?

To me, this demonstrates why learning disability services need to be proactive not reactive. Kids like Aidy are not going away, there have always been people with needs like his and there most probably always will be so why do we wait until the system fails them instead of setting up bespoke support that won’t.  It demonstrates why person centred, positive behaviour support and working closely with families is so vital when working with children and adults with such complex needs. And why where someone lives and who they live with is so important and how getting it wrong can have devastating consequences.

It demonstrates clearly why the LBBill is so badly needed and needed now.

* please follow Lisa on Twitter @LisaPer83819459 any help or support that can be offered will be gratefully received

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All in this together?

Councillors in Oxfordshire will vote tomorrow (9th Dec) on whether they should have a 19% increase in their allowances despite facing a £11m budget ‘black hole’ ….yep! 19%…I kid you not!

As someone who works for a small charity in Oxfordshire, that supports families of people with learning disabilities – and as a one of the new co-chairs of the Learning Disability Partnership Board I was extremely angry to read about the proposal in changes to County Councillors allowances The Oxford Mail article

The argument is that the councillors need to be appropriately renumerated and this is an attempt to encourage more diversity.

We get that! – Oxfordshire is an expensive place to live and work, and we understand why councillors need to consider increasing the amount of money to cover expenses and to attract people to be councillors. I totally understand the fact that we need people from all walks of life and backgrounds to be councillors and that they haven’t had an increase for sometime… However – join the club Councillors, neither has anyone else!

The same challenges apply to people trying to deliver safe, good quality services for people who need them. Care providers in Oxfordshire have seen their contract rates frozen for a similar period of time, whilst being asked to do more for less, the buzz-phrase of our time for our social care services.

G’s had the same amount of funding in his personal budget for the last 5 years, despite inflation and higher costs (as have, I assume everyone else with a social care need). And – Personally I’ve not had a rise in my hourly rate for my work in 5 years either. We’ve all had to ‘cut our cloth’ accordingly and it’s  getting increasingly difficult for all of us to make ends meet!

To quote an article from the Oxfordshire Association of Care Providers – Chief Executive, Eddy McDowall

“….a key flaw in the independent review for allowances is that it is not in the context in which Councillors work. They are responsible for ensuring, and assuring Oxfordshire residents, that scarce public funding is well-spent. That means, to paraphrase local MP David Cameron’s 2009 Conference speech, we are all in this together, which is why…public sector wages are frozen.
We totally disagree with a double-digit pay increase at a time when the same Councillors are agreeing reduced contract prices forcing home care workers to live on less than the National Living Wage. If we have £150,000 per year to spare in the £11m ‘black hole’, there are innumerable alternate ways to spend it.
Let’s start with increasing the health and social care contract values, so that it is actually possible to pay care workers a decent wage level to maintain essential care and support services across the County. At the £14.47 average unit cost per hour that OCC price their home care contracts at (following their first review since July 2011), the Councillor allowances increase of £150,000 could provide an additional 10,366 care hours in Oxfordshire, per year. After all, you never know when you might need social care.

In addition this amount would

  • provide 30,000 hours of day support at a support ratio of 1:6  for people with learning disabilities at a cost of £5/hr – this would enable more people , many of whom receive little or no support currently, who have mild to moderate learning disabilities to have day services.
  • 70% of family  carers  who have relatives with learning disabilities are older carers using OCC day services, this could make a huge difference to elderly carers.
  • 16, 662 hours of day support at 1:3 . As a key example – this is typically what those using day services get now who have severe learning disabilities and many families no longer get 5 days per week, so it increases the strain on families. This is £9/hr. – which also demonstrates how little is actually being spent on day services for those who have been assessed as having very high levels of need.
  • It would support 3 people with severe learning disabilities needing more support, in supported living for a year.
  • It would provide a package of support that enables someone with a mild to moderate  learning disability to be in supported living, costing £500  /week  and would enable them to support 6 people for a year.

Oxfordshire county council is currently consulting on its ‘Big Plan’ for changes to learning disability services. The changes are an attempt to do things more efficiently in light of the ‘efficiency savings’ that must be made because of funding pressures. For as long as I can remember social care services have been subjected to ‘efficiency savings’…or cuts as we call them, because, let’s face it that’s what they really are! There are only so many efficiency savings that can be made before they start really impacting on people’s lives

Councillor Rodney Rose said that he expected the measure to be unpopular and that there was never a good time.

“The council has put off increases in allowances for years because it was never the right time, but what you have to accept is there is never really a right time”

OxFSN has never been a campaigning organisation. We try to work with our local council. However our role is to speak up for people who are unable to get their voice heard and give them a voice and we do feel we need to speak up on this.

So, Dear Councillors of Oxfordshire County Council

Whatever the reasons you’ve been given and however tempting these measures appear to you, giving yourselves an increase of this percentage (or any percentage actually) when everyone else is facing such difficult times doesn’t look great. Please reconsider this immoral proposal! And vote NO tomorrow!




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Love, Empathy and Understanding

A child dying is every parent’s nightmare. Knowing someone who has lost a child is a relatively rare experience for most people but I’ve been to far too many of my friends children’s funerals over the years of being Mum to G.

At G’s old school they had a special area, a memorial garden with an array of plaques in memory of the children who had died …how many regular schools have that I wonder!

Some had what is termed as ‘life limiting conditions’ but not all, and no matter the cause or reason for their death, each time it was heartbreaking. Each time my heart went out to the family. Each time I wondered how the hell I would ever be able to breathe in and out again if that was G.

Over the years I’ve noted many reactions to the death of a disabled child. One that has stayed with me is….the sympathy of what the family are going through response tinged with…well what a relief it must be for the family kind of implication. Sometimes this has even been voiced. One family I knew many years ago, had a daughter with Down Syndrome who died tragically from a virus when she was 7 years old (nothing to do with having Down syndrome just a random virus). I recall vividly the Mother telling me how others, even family members had commented that she should draw comfort in the fact that it was J who died and not her younger (non-disabled) sister. It shocked me to the core that so little value was placed on our kids.

Although I’d known many other parents whose kids have died (Some of them close friends) when it happened to Connor it was the hardest. It was also the first time it had impacted on my girls (made so much worse by the fact that their Dad died just 6 weeks before). They’d known Connor, most of their lives, grown up with him, spent time with him, got to know and love him. The nature of his death was the most shocking too – and, difficult 16 months on for even us to get our heads around, let alone his family!

When Connor died there was a collective shock reaction. Others outside family and friends had got to know him through Sara’s blog. They too had seen the joy he brought to his family and everyone else who knew him. They had revelled in the quirky, funny dude who said the funniest things and brought so much joy to so many. They shared Sara’s pain and anguish when he was admitted to the unit and experienced the horrific shock and disbelief at Sara’s post on July 4th 2013. A healthy young man whose death was entirely preventable – who would still been here today had those in charge of his care had ‘cared’ for him as they should have – what’s not to be shocked about?!

Rosi Reed didn’t have the same collective response initially (although I sincerely hope she does now) because she couldn’t share her story. She wasn’t blogging about her beautiful boy. She’d lost touch with her network of friends over the years, she didn’t have a life raft and it seemed that others around her didn’t see him like she (and her close family) did because they didn’t know him.

But surely other parents of disabled kids would understand her loss.

In the work I do I’ve met so many families over the years – A wide range of families from all walks of life and of all ages – Parents of disabled children and adults, brothers and sisters of disabled children and adults, Grandparents caring for their grandchildren, families with step children, foster children, adopted children. We all have different ways of doing things and different ways of reacting to our circumstances…because we are all different and we are each a product of our individual journeys. But, whatever our difference, I’ve always found there is a strong empathy between families of disabled children. We share similar experiences of the system and fight similar battles and that usually results in a common bond.

On Friday I spent the afternoon/early evening at G’s house. The staff had arranged a Halloween party and all the families were invited. We get together fairly regularly for house meetings but not often socially in the house with all our kids. It was lovely to all catch up.

I have a deep affection for the other young people in G’s house and I love how we all look out for each other’s kids. I’d be truly devastated if anything happened to anyone one of them!  So, imagine my disbelief when last month I received this comment in response to the Dust in the Corner : Justice for Nico blog post.

 Not only was this from another parent of a disabled child, but from another parent whose kid shared the same house as Nico!

 Chris Bullmore says:

September 21, 2014 at 9:37 pm (Edit)

What a pity that none of the above contributors has heard what the parents of the other three young people who shared the house with Nico have to say. A very different story would have emerged, and whilst all would sympathise with Nico’s parents a lot of the statements that have been made are not supported by the facts. In due course we are sure they will emerge, but in the meantime it would seem that some are jumping on a bandwagon that simply does not exist in reality, and they should think about what they have said about this event in order, it would seem , to promote their own particular causes.

 *Note he said “while all would sympathise”…not all do!

My response:

The FACT is that a young man died and his parents have not been allowed to understand the full circumstances surrounding his death – over two years since it happened. Not letting them see the findings of an internal investigation because they thought it would be too upsetting for them.
everything written is this blog post are from the families experience. if Southern Health had been more open and transparent perhaps more of the facts would be available and the family wouldn’t be left in this horrible limbo.
the intention of this blog was to give a voice to a grieving mother I personally believe that is a pretty good cause to promote

Then on Thursday this appeared….

  • Intheknowsays:

October 30, 2014 at 8:58 pm (Edit)

Bit difficult for southern health to comment, as they were nothing to do with Nico’ care! The merger happened long after Nico ‘s death. Just waiting…. We are all just waiting….. The truth will out… Then what will the harpies do?!

 I was tempted not to allow this comment, not wanting to upset Rosi and her family –God knows they’ve been through enough. I did however feel that in the spirit of transparency it ought to be out there so approved the comment and replied

My reply

Ridgeway announced that Southern Health would be taking over in March 2012. In April relatives received
letters telling them that they were taking over formally from November 1st 2012 (not long after Nico’s death at all. The fact that when Nico died in the August when this home was still being run under Ridgeway is of no consequence. Southern Health have been responsible for the aftermath and has behaved appallingly to this family as they have with Connor Sparrowhawks.  Every single aspect of Nico’s death has been dealt with by Southern Health since the day he died and it is their legal team who are grinding the family into the ground…so yes actually I think they should comment.

While I understand that as a parent who’s relative is being supported by Southern Health you’re probably very frightened and worried about the future of their (your relatives) support. God knows I would be, your vitriolic response to this family saddens me. I only hope you never have to go through what they have …and then have to receive such lack of compassion not only by another human being but a fellow parent of a disabled child.

I’d also love to know how you could possibly know all or indeed any the true facts when the family don’t.  But, I too hope the truth comes out so Nico’s family can finally find some peace.

As for the Harpies comment, well …I can only say I hope you feel better for releasing all that bile

As I was writing this another comment appeared on my blog…

intheknow says:

October 31, 2014 at 8:55 pm (Edit)

Not bile at all dear. Just a ponderance. Perhaps you should all wait for the inquest verdict, and not be blindly swayed buy subjective comments. Unless you were actually there you have no knowledge of the facts.

The “Harpies” comment and calling me “dear” was actually like a red rag to a bull for me but, I decided to wait…take a deep breath, compose myself and try to put myself in his shoes -try to understand why he’s being the way he is. (clearly a he, a couple of give away’s…‘harpies’…’dear’)

He’s obviously angry and upset at the thought that Southern Health could lose their contract. The staff are probably upset and have no doubt been speaking to him about their experiences – and the equilibrium in his son’s house is no doubt being disturbed. I totally get that! I totally get that as a parent you would desperately want to cling on to the support you feel is working for your son.

What I don’t get is the lack of empathy towards a family who have lost forever their beloved son. I don’t get that as a parent of a disabled son he would deem it appropriate (on any level) to send goading comments that imply he/they know something no else does. The fact this person calls himself ‘in the know’ is a bit disturbing…How does he know? Was he actually there?  – Highly unlikely I think. Were staff there? what do they know that they have shared with him?

The fact is no one knows!…and how tragic is that?

Nico Reed died over two years ago. His family still don’t know the circumstances surrounding his death. They have no answers. The Trust responsible for his ‘care’ have behaved disgracefully to them and the family of Connor Sparrowhawk…end of!

So, my reply to his latest comment


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Truly, Madly, Deeply

About 6 weeks  ago I watched Truly, Madly, Deeply – it’s one of my favourite films.

It’s a film that hasn’t been on TV for a long time so I bought the DVD (it was bloody expensive, but I thought sod it, I really want to see it again)

Watching a film about someone dealing with the death of her fella is possibly an odd choice of viewing , especially as it’s just over a year since my own fella died.

People who knew Bob will also no doubt think I’m torturing myself even more because Bobby bore an uncanny likeness to Alan Rickman…he really did!

alan rickman 1 Bobby

I remember the first time this was pointed out. A  work colleague had texted him…(possibly emailed but I can’t remember if we had e-mail then) ….

“Why did nobody tell me Bob Barnes is starring in a film with Bruce Willis?

Alan Rickman wasn’t particularly well known then really. He burst onto the screen as the baddie in Die hard – My Bobby was a dead ringer!

alan rickman 4

It’s weird when people say you look like someone, sometimes other people see it but you don’t… more often than not actually. We watched Die Hard and both thought Blimey!!! Especially because a few years before Bob had sported the exact same style of beard.

I have to say Alan doesn’t have Bobby’s sexy chin dimple but apart from that, well yes pretty bloody close  and  many people have commented on it over the years.

anyway, back to the film…

In the film, Jamie (played by Alan Rickman) comes back to help Nina (played by Juliet Stephenson) get over the fact he’s died and help her move on without him.

I watched Nina sobbing to her counsellor – tears and snot dripping down her nose. I recall looking that attractive many times in the early weeks/months after Bob died, but all I could think about when I watched is – I’m glad I didn’t have a counsellor. I’m glad no one was calling time. My friends were and still are my counsellors… Must be feeling better!

Also, Nina’s new love interest in the film is a chappy who works with people with learning disabilities….another coincidence …it was starting to feel that this film had a message after all and not simply the grief fest I anticipated with my recollections of past viewings.

At the end of the film Jamie stands at the window and watches, tearfully as Nina goes off with her new chap. Starting her new life. She was ready and now he could leave. All the ghosts cheered! Jamie had come back, brought all his ghost friends with him, turned up the heating…irritated her to the point where he was getting really annoying. She loved and missed him but eventually realised he was dead and life goes on. A brutal synopsis possibly but kind of the gist of it.

I’ve never been spiritual and I don’t think for one minute Bob’s been looking down and watching me. If there actually is some kind of spirit moving on shit, I hope he did it straight away. I personally can’t think of anything worse than watching your loved ones in pain and not being being able to do anything about it. I did feel somewhat envious though at the thought of full on visits – I’ve willed Bob to come back over the last year. I’ve gone to sleep desperate to dream about him, but so far only managed it twice …both times were matter of fact, him just kind of being there, in the background, just being himself.  Disappointing, because I wanted a message, something more profound and at the very least I wanted him to be the main feature!

All I can say is it’s helped in the grieving process. There’s no new chap for me! I’m not quite that ready for that yet but, it’s helped me think about moving on. Not away from everything we had. That will always be there. I’ll always miss him. I’ll always wish he was still here…but the fact is he isn’t, I still am and life has to carry on! That’s me getting tough with myself by the way! – And because I know it’s what he would want me to do.

After watching the film I made some decisions.

I decided I was going to sell the house. Not only sell the house but move out of the village too. I’ve decided I want to live in Town. I think I’ve probably always been a towny at heart. I decided I should live somewhere smaller and more manageable (financially and practically) …’s a BIG DECISION FOR ME! 

I’ve had estate agents round to value the house. Had the advised three different valuations from different estate agents and I opted for the one in the middle – watched enough TV programmes on this stuff over the years to at least pick up some tips.

A big test for me is that usually when I’ve, cleaned, tided and decorated – I fall in love with it all over again and don’t want to leave, but this time I didn’t feel like that. – good sign I think!”

 The ‘For Sale’ board went up just over two weeks ago.


The photos are done and online and I’ve had 4 viewings in the last two weeks and another one booked.

When the board went up the girls were both here. Ollie posted a picture of the board and commented on how emotional it was and what a great place to live this had been… what great parties we’ve had here and what happy memories – If only you could sell house on happy memories we’d have people queuing to buy it.

It’s going to be very tough leaving my home of 21 years. The home I brought my kids up in and where we all lived as a family. A place with so many happy memories. The only family home my children remember living in. A house and a village I love – a place I feel completely comfortable in.

But, it’s also the place where Bob died. It has particular memories I don’t want to have any more and struggle to erase…. and yet it’s conflicting emotionally because it’s a place still full of his DNA  – leaving it will feel a bit like I’m leaving him. I’m telling myself it’s only bricks and mortar but so much emotion is invested in the bricks and mortar of this house.

I’m pretty scared too actually, so much to do and on all on my own. I’ve never bought or sold a house before (I kind of left that to Bobby in the past!) I’m pretty scared of leaving and starting again somewhere new. It’s a big step and a massive challenge.

I’ve heard all the other cliches too,  like…’home is where the heart is’  but the reality is my heart isn’t here anymore. Life just isn’t the same here without Bob. And, although I’ve loved it all, (truly, madly, deeply I have) I think it’s time for me to start the next chapter of my life somewhere new.

Tough one, but it has to be done I think…and I think I’m ready

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“Sometimes you get angels” – what a good support worker looks like

Many years ago a friend of mine said “Sometimes you get angels”. She was referring to those people who come into your life and support your kids. People who just get it – people who go the extra mile. Sara blogged about the Charlies Angels, who have gone above and beyond the call of duty with Connor – before and since his death quite a few times now. Really special people who make a massive difference. We too have been lucky to have quite a few of those supporting G over the years . Learning support assistants and teachers at both schools. The odd social worker and staff at respite/short breaks to name but a few.

I’ve mentioned quite a bit on here about G’s brilliant support staff at his house but last week I heard that one of them was leaving…I’m gutted!

Sacha (her real name) is to me the epitome of the perfect support worker… and here’s why

Sacha has been working with G since the day he moved in. She was a quiet 17 year old when she started  (and we were involved in her recruitment) and despite some initial reservations about her being so young, she had a lovely way about her, was keen and obviously willing to learn. We could tell that G  liked her and we liked her too!

In the last 5 years she’s grown in confidence, shown real initiative and is always smiley and welcoming when I go to pick up G. She emails and texts me regularly with stories about his day and his week. She sends picture and videos showing me what he’s been doing which I love. I get these messages from other staff too but there’s just something about the way she writes which make me smile. It’s no coincidence either that when I get a Facetime call from G it’s usually when Sacha is on duty. ( unless of course he’s rang me himself by accident – I’m sure he thinks I’m a app on his ipad!) It’s obvious she adores G and the feeling is mutual. Below are a few recent emails. I have so many of these it was hard to choose which one’s to add here…
sacha text 3sacha text 4 text from Sacha 2







What I really like about Sacha is she doesn’t think she’s “the expert”, even though she knows him really well. She always asks me what I think and adds to the things I tell her with her own opinions and experience of working with him. I really appreciate that… even though she probably does know him as he is, on a day to day basis, better than I do now.

Last week I was sitting in on induction training for new staff with Dimensions. The aim of this was to observe how the new induction training includes stuff about working with families. (They were a great bunch of new recruits and I was really impressed with their values and attitude). G’s staff team demonstrate to me that with the right approach to families you can get this absolutely right and I was talking about this when I got this text from Sacha and Celia (another support worker).

text from Sacha

I bloody loved it! Not only does it keep me informed and make me feel involved but it demonstrates that she’s able to encourage him to do new things (for the record I wouldn’t dream of taking him on a bus!) I read it out to the group as an example of good practice




I found out she was leaving by a phone call from the manager. She didn’t just want to tell me in an email because she knew I’d be upset (she rang round the other families who no doubt will be feeling the same! – note, more good practice) Sacha then sent a personal email to us all telling us what a hard decision it was for her to go, how much she loved working with the people she supported and how much she’d learned from being there…oh and that she’d like to stay in touch with them all if that would be okay.

I guess because she is so young and so great at what she does it was only a matter of time before she moved on to something new, but selfishly, I hoped she’d stay a bit longer and maybe be promoted within the organisation instead of leaving all together. I honestly saw her as a team leader or perhaps even a manager one day, such is her ability to listen, learn and be creative. I know it doesn’t always follow that a good support worker makes for a good team leader or manager but in my mind she certainly had some of what should be the essential qualities.

I suppose if I’m being logical I’ve been around long enough to know that people will always come and go in G’s life (we, families really are the only constant…another reason for making sure we stay involved) and have to date managed to keep in touch with most of the one’s I’ve wanted to (helped by things like facebook) and there will be others who come along and be equally fab.  We’re lucky to that we have a great staff team in place anyway and she’s not the only great member of that team. But, I’ll REALLY miss her and I’m sure G will too.

What we have in a support team should be the norm. I pondered on the “sometimes you get angels” comment and wish we could lose the “sometimes” none of this should be just down to luck or individual personalities. For me, a good support worker is someone who shows respect to and values the people they support AND THEIR FAMILIES. Recognises the value in involving families and the people who know and love the person they are supporting best. I’ve always felt that good, honest communication is the key and I had this in bucket loads from Sacha. I’m sure she never felt she was doing anything extraordinary, I’m his mum after all, why wouldn’t she do this but, because she kept me informed about the good stuff as well as the occasional difficulties…and because it was so regular and done naturally I  completely trusted her to support G well. Given the horror stories around at the moment in adult social care this is a BIG DEAL for me and it makes her pretty bloody special in my book!

She’s asked me to write her a reference (sniffs) and of course I’ll be happy to do this and wish her all the best. Any organisation that takes her on will be lucky to have her and our loss will very definitely be their gain.

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David Starkey, Justice for LB & Me #107days

I wanted to do something for the #107 days campaign because apart from the collective outrage that has been so evident it’s restored my faith in humanity. The sense of positivity it has produced is infectious, heart warming and gives me some hope that things can and will change in the future.

Sara is one of my dearest friends and I’ve known Connor since he was around 5 or 6 years old.  We are part of a group of six close friends who all met when our dudes attended the same academy for crazy little dudes. We call ourselves the “life raft” Our families have all socialised together for years and so obviously our kids all grew up knowing each other well too. Connor’s death shocked and saddened all of us more that I can say and we remain incensed that it was so preventable. I’ve spoken a lot about Connor and Sara on my blog, not least because his death came just 6 weeks after the sudden and unexpected death of my husband Bob and we’ve been coping with grief shit stuff on a similar trajectory. Similar but not the same, because of course Bob’s death was no one else’s fault. As I’ve been trying to deal with my own grief I’ve watched my friend and her family endure the most inhumane treatment by those ultimately responsible for their son’s preventable death. Compounding their grief and making dealing with their loss so much harder.

Although I’ve adopted today I’ve been raising the Justice for LB campaign in all the work I do, both for Dimensions UK a Family Consultant and Oxfordshire Family support Network as Transition support coordinator. I’ve raised it in training, in meetings and parent workshops, basically any chance I get to get this story out there. And, I’ll continue to do this long after the #107 days campaign.

OxFSN are also working with a number of leading national organisations to develop a project to support families who’s kids end up in ATU’s based on our FLOAT idea. We are working with Oxfordshire County Council and the CCG to review and improve learning disability services generally in Oxfordshire and are putting together a bid for funding to continue our work on improving transition to adulthood with our local self advocacy group, My Life My Choice.

My contribution for day #94 though focuses on the SEND reforms. I’m speaking at the the Sunday Times Education Festival. It’s a massive event focussing on all things education not just special educational needs. There are a lot of high profile speakers and I’m up against David Starkey (and many others) in my time slot, so I’m not sure how many people will come along and listen to me, but it’s a chance to talk about the SEND reforms and the Children and Families Act and what it should mean to families and I was thrilled to be asked. I’m dedicating my talk to Connor and his family

My main focus is on Person Centred approaches and why without them the SEND reforms are set to fail. The need for this way of working in health, education and social care to become embedded in the systems that surround our children and the need for families to be treated as respected partners, involved throughout. I think the SEND reforms bring a number of great opportunities.The 0-25 single plan should ensure that there is more joined up working between the different agencies and across children’s and adult services. The local offer should ensure that all the information parents and professionals need is all in one place and easily accessible (and hopefully jargon free). With the great opportunities come many challenges too. A massive culture shift within all services is needed and although new strategies are proposed as the old adage goes “culture eats strategy for breakfast” and changing culture is never easy.

Underpinning all of the reforms are person centred approaches. Personalisation has been around for a while now. Education, however have yet to really come on board with the whole personalisation agenda and in my experience the use of person centred planning in schools has not really been embedded. I’ve seen some great examples of good practice around the country but in training I’ve delivered, many education professionals have argued that they already take an individualised approach to teaching and this has resulted in some resistance to change. If the reforms are to work then change they must! The difficulties this has caused have been perhaps more noticeable in the transition to adulthood stage but with a single plan and a greater need to all work together throughout the 0-25 age range it’s imperative that there is a consistent approach, a single way of working and a common language. Person Centred approaches provide this. The person centred thinking tools used to plan and reflect can easily be used by everyone. They are simple, practical, grounded in common sense and rooted in the principles of inclusion and equality. This isn’t just something that can be used for disabled children and adults; it works for everyone. So, personalising education should be adopted by all schools and not be something different that happens in special education.

Person centred planning naturally fosters better partnership working too. You have to work together and include everyone and everyone gets their say. Working and planning is done in a way that promotes mutual respect and understanding in a spirit of openness and transparency. By working this way we are more likely to lose the “them and us” mentality. We can move away from” the professional knows best” or the “the parent knows best” view that can become so adversarial and instead look at how we can work together positively and productively for the best outcomes for and, more importantly with the person we all care about.

People who have embraced this way of working would now never work in any other way and as a parent it’s the only thing that has ever made any real sense to me. I’m passionate about it… mainly because I’ve seen how it has changed my son Guy’s life, given him a voice and consequently some choice and control in how he lives his life day to day. We initially started using person centred planning when he was in the moving into adulthood stage (‘transition’)  and it’s made a huge difference both for him and me. It helped us to plan the life he has now, where he lives, who he lives with and how he needs to be supported. It helps us remain completely involved in his life as a respected part of the team of people who support him. Governments will come and go but as far as I’m concerned person centred approaches will remain for Guy, whatever policies they bring in he will remain at the centre of everything we do and this is my message to the families and professionals I speak to today.

Far too often I’ve seen the devastating consequences of what can happen when individual needs are overlooked in order to fit within existing systems, processes and paperwork and families are ignored and excluded. Sometimes as we are all too familiar with now the consequences lead to the ultimate misery, the loss of a much loved child.

Connor didn’t have a person centred plan, although we were trying to arrange a planning session just weeks before he entered the unit. There was poor planning for his move into adult life despite the positive and person centred aspirations for him from his family. People, systems and processes failed him in the worst way possible. Within the unit, as well as the lack of basic ‘care’, person centred approaches were non-existent and his family sidelined and excluded. In contrast however, Nico had a full and detailed person centred plan which was ignored. Nico’s family were helped to do this by some of the most skilled person centred practitioners in the country, who happened to know the family…So clearly, simply having a plan, however good it is, isn’t the answer. It HAS to be followed. Those working with our children need to live and breathe person centred principles, It’s not enough to say they are person centred they must demonstrate it in their thinking and practice (and the language they use).

I remain convinced that if this way of working had been embedded in the culture of this Trust, at senior level and on the ground, then both young men would be alive today. And, if it’s completely embedded in the culture of all services and agencies that work with our kids it will prevent such totally avoidable tragedies happening again.

Sadly we can’t change what happened to Connor but those of us who knew him (and many that didn’t but got to know him through the pages of Sara’s blog) are determined that some positive change will happen as a result of his death. We will do everything in our power to make sure that it doesn’t happen again to any other young dude. We will strive to improve services to ensure that people with learning disabilities and their families have a good quality of life and we will fight for…#justiceforLB   #JusticeforNico   #justiceforallthedudes Gail, Guy & Connor

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