Reasonable Adjustments

In my last post…many moons ago, I wrote about G’s cyst. G’s cyst became massive. A lump the size of a golf ball on his forehead and growing all the time.


Despite the GP’s insistence that it would probably shrink or probably not get any bigger, it did and even the plastic surgeon we saw in May this year said it would have been easier if they’d seen him earlier. That said, he told us it would be a pretty straightforward operation that would carry limited risk.

In spite of these reassurances I was worried. Actually I was terrified. In light of all the horror stories about the NHS constantly in the news and on social media, not least the Mazars report into deaths of people with learning disabilities there are obvious consequences to families like ours – while this was one Trust, the knock on affect for many of us is a lack of trust in all NHS Trusts. The idea of G going into hospital, any hospital filled me with fear and dread. However much we knew it needed to be done.

A few weeks before he was due to have the surgery I contacted the Learning Disability Liaison nurse, the fabulous Stephanie Ross (I’m naming her because she is bloody brilliant). Steph worked with me, his staff team and the ward where he’d go for his surgery to make sure all the right adjustments were made to make his visit successful. We discussed things like G’s inability to wait and the fact he’d need a separate room (for everyone’s sake not just his and ours). We talked about the fact he wouldn’t keep his wrist band on or his surgical stockings. I told her how I worried he wouldn’t stay still to have the cannula put in and that I couldn’t even see him tolerating the other pre-op checks like blood pressure etc. Even though he hadn’t had an op since he was 3 years old I had a pretty good idea what he would and wouldn’t tolerate – after all this is a young man who won’t even keep a hat on in cold weather!

Food has always been a good way to keep him distracted or keep him relatively still but of course he’d need to be nil by mouth for his surgery– another worry – G’s not good with nil by mouth!

Having talked all this through with Steph I felt less anxious. There were things that could be changed/done differently and she would prepare the staff on the ward for his arrival.

On the day of his surgery we (Myself and two support staff) arrived at the JR and went to the reception on the ward. They showed us to his private room and we asked if it would be okay wheeling him around the ward in his wheelchair and this was fine. G was happy to watch the hustle and bustle of the ward and particularly liked a spot where he could wave and smile at a pretty, young receptionist. As his energy flagged due the lack of food and drink since the evening before he was more content to stay in the room and look at his Ipad.

After a pretty long but less distressing wait than we were anticipating we were eventually seen by the Anaesthetist and the surgeon. We talked through the options for getting him to sleep and what stiches they would use. They couldn’t have been more helpful. They explained what they’d need to do and asked us what he would or wouldn’t tolerate. The Anaesthetist suggested giving him a drug to make him sleepy with the warning that it could have the opposite effect. In which case they’d have to postpone because there was no way they would get the cannula in otherwise and this would be too distressing for G. We decided, nervously to risk it.

When G had an anaesthetic before he had come around very quickly. He tried to get off the bed and attempted to pull the cannula out. They agreed we would be called as soon as he was out of surgery and in recovery.

Luckily the drug worked – phew. We managed to get his wrist band around his ankle and his surgical stockings on…and his gown half on. We even managed to get him on the bed while he was getting sleepy   – even this would have been impossible before. The Anaesthetist cheered when she came to see him and said I could go with him to the anaesthetics room while he had his cannula put in.

The term commonly (and legally) used for all this is ‘reasonable adjustments. I really dislike the term ‘reasonable adjustments’… the word ‘reasonable’ is so subjective isn’t it. What I consider reasonable may be completely unreasonable to someone else and visa versa. The GP clearly thought we were being unreasonable wanting the cyst removed when it was much smaller.

I prefer the term person centred, and the staff at the JR couldn’t have been more person centred. Because they listened to the people who know him best and did everything to make the experience as good as it could possibly be for G (and us) his op was a success. While I deferred to the expertise of the medical team at the hospital they deferred to mine and his staff’s knowledge of him as a person. They adjusted their usual way of doing things to fit his needs and if this kind of thing can work for G it can work for anyone.

I sit on the Transforming Care Partnership Board. We talk a lot about reasonable adjustments. I’m trying to gather other people’s experiences with a view to changing poor practice and highlighting good. So many of the other families I’ve told G’s story to have also mentioned great experiences at the JR and personally I can’t praise them enough. We so often hear the horror stories of when things go wrong for people with learning disabilities and with elderly care too and of course these stories need to be out there. However, there is clearly some great stuff happening too and these need to be heard. And, while I very much hope we won’t need another visit to the JR for this kind of operation anytime soon I think I’ll be less terrified next time.

As for G, well just look at this handsome face!



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In Who’s Best Interest?

G has a sebaceous cyst on his head. His Dad used to get them and apparently they can be hereditary!

Bit annoying really because quite frankly this ‘kid’ has enough issues without inheriting others but hey ho! That’s life I guess and at least there’s no signs of varicose veins yet!

The cyst started out quite small about three years ago. I asked his staff to take him to the doctors to get it checked out, as you would!

Doctor said it was fine, just a sebaceous cyst that would probably grow a little bit and then shrink. I was obviously relieved it wasn’t anything more serious!

He’s been back many, many times over the last couple of years. It has grown and certainly is showing no signs of shrinking. Each time the doctor has said “it’s clearly not bothering him and they won’t remove it for cosmetic reasons.” Each time they have said It wouldn’t be in his best interests to have it removed. And, it shouldn’t get much bigger!!!”

I was pretty upset by this. When Bob had these cysts when he was younger they were taken out as a matter of course…for cosmetic reasons. After all what young man wanted to walk around with a lump on their head that could be easily removed. It was a pretty simple procedure.

I couldn’t help thinking that the rules were different for people like G than they were his Dad. How you look clearly isn’t as important!

That upset me too as I’d always tried to help him fit in/not stand out so much by the way he looked, what he wore and….well, he’s always been so handsome. More than anything though I was also really worried that if it grew then removing it would be a less simple procedure, which certainly wouldn’t be in his best interests!

The cyst, right at the front of his head, above his forehead is huge now! The size of a two pence piece in diameter and growing upwards. We’ve been keeping his hair longer in an attempt to keep it hidden. This worked for a while but now it’s poking through his hair. People are starting to notice now….with comments like “OMG what’s G done to his head!”

The last time his staff took him to see the doctor, he said pretty much the same thing with the added comment… “it shouldn’t get much bigger than a golf ball”

A golf ball!!! – Seriously a bloody golf ball? Golf balls are F***ing huge. Not so much when you are trying to hit it with a golf club (I know because I’ve played golf in the past) but, I certainly wouldn’t want something the size of a golf ball sticking out of my head would you?

Concerned and upset by this I asked the manager of his house to set up another appointment that I could go along too. His staff had reported that he was touching it more (clearly starting to bother him!) and I noticed it seemed to have grown even more than the last time I’d seen him three weeks before, and, it had changed colour!

So on Saturday I met the Doctor.

He started by explaining that operations for cosmetic reasons were not routinely done on the NHS anymore. And, that having this cyst removed would require a general anaesthetic which HAS A RISK OF DEATH!

Deep breath! ……I know this!

I explained that G didn’t always show he was in pain, or he was uncomfortable like other people. When things get bad (much worse than many people would tolerate) his change in behaviour is the only way we know that something is really hurting him. The last time this happened was when he was taking food out of his mouth (even chocolate) and after continually visiting the dentist, insisting it was a problem with his teeth and finally getting them to sedate him to have a good look around his mouth he ended up having two teeth removed. Two teeth that were so rotten I can’t even begin to imagine how much that was hurting him. And yet, all he was doing was taking food out of his mouth!!!…he was still smiling, still going out and having fun.

While we were there G was touching his head, pulling at the cyst. After some discussion the doctor agreed to make a referral …checking with me that this was what I wanted. He would measure the cyst and then find out whether this would need to be a referral to the Dermatologist or the plastic surgeon.

I hesitated….because in my head all I could think of is that I am requesting that my gorgeous boy goes through major surgery with a general anaesthetic that by its very nature is a risk….because actually any major surgery is!

Of course what I wanted was that this had been dealt with before it got to this point. I raised the cosmetic issue and mentioned what had happened with his Dad and was told that the NHS didn’t do operations purely for cosmetic reasons anymore and things had changed. I get this. Money is tight!

I was informed that this wasn’t discrimination because G had learning disabilities and that they wouldn’t have agreed to anyone having this surgery unless the person was in pain. However he also implied that the cyst could have been removed at the surgery, using local anaesthetic for anyone else.

Now! Call me cynical but isn’t this an equality issue?

Even when the cyst was small it’s doubtful any operation to remove the cyst would have been able to have been done for G under a local anaesthetic. He is not great at staying still! But, the operation would have been smaller, shorter and resulted in less recovery time and less scaring for him.

I feel physically sick at the thought of him having to go through this surgery but I can’t help thinking…it would have been in G’s best interest to have removed it sooner and  in who’s best interests has this actually all this been for?



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Involving Families & Ticking boxes

Tomorrow, I have a meeting with the manager of G’s supported living service (or as I like to call it ‘his home’) and a care manager from Oxfordshire County Council (OCC). The meeting is about G’s support plan, following his recent reassessment after the Independent Living fund closed and his support funding transferred totally to OCC.

I wasn’t originally invited to this meeting… I know WTF!! …I mean, why would they not invite me?

I hope she doesn’t throw in the ‘it’s because he’s an adult’ shit, because he’s been an adult for seven years now and I’ve never, ever been excluded before!

Thankfully G’s support provider via his excellent manager alerted me to the fact that the care manager wanted to come to meet G and do this review and she insisted that we set a date when I could attend (because that’s how we roll).

I’m strangely looking forward to this meeting!

This isn’t the first change in family involvement I’ve noticed recently though….

When the transfer from ILF took place the person employed by OCC to do the reassessments (an independent consultant type chap brought in from Wales on a short term contract  -at no doubt considerable cost, given what he told me his hotel cost for 3 days a week!) came to visit me. He spent two and a half hours in my kitchen, mainly talking about himself and being rather jolly (clearly being paid by the hour!) He told me and the other families of the young people G lives with, that he didn’t need to involve families….really?

He also didn’t share the draft assessment with me before it went to panel and was subsequently agreed. He sent the final agreement of continued funding and the assessment results to G (who can’t read of course) ...thankfully G has a great Provider and great staff and they sent it to me immediately. I’ve yet to sign of course, because so much was wrong in the assessment. I mean, if you are going to label someone with a medical diagnosis at the very least get that bit right!

Last week I got a letter regarding Direct Payments. The letter was addressed to me and talked about ‘my’ direct payments!

Last time I checked I wasn’t in receipt of any Direct Payments. G is of course and I manage them for him, but it’s his money, his Direct Payments and such letters have always been addressed to him and sent to him via me as his court appointed Deputy under the Court of Protection and his appointee for benefits. OMG Have they suddenly forgotten he’s an adult?

Also last week…

I was inundated with phone calls and emails from worried parents asking my advice about what to do about their recent encounters with OCC social care services about their kids/relatives support. Some of the things they are being told are deeply worrying and (more than) possibly illegal but this seems to be the way things work in times of austerity. A flavour (paraphrased slightly) below!

“We only support families in crisis”

“Your child is still at college, come back to us when they leave”

“I can come to the annual review (residential college) We can double up his annual review with his reassessment, but can’t guarantee that there will be any increase in funding!” to a parent of a young person at residential college moving into supported living!

A general ignoring of requests for assessments…can’t get a response type stuff was pretty common too.

I’m sure we are not the only local authority area where this is happening but there’s a rather nasty smell around here right now!

Also last week…

I was in discussions with a colleague about the extended contract of Southern Health NHS Trust having recently had a request for the Learning Disability Partnership Board (of which I’m one of the co-chairs)  to be involved in the transfer arrangements to a new provider. Now bearing in mind that OCC cut funding to the Oxfordshire Learning Disability Partnership Board in April this was a bit strange. We are working on the next steps and the evolvement of something new to represent people with Learning disabilities, families and other interested parties but we are not there yet. These things take time…oh and money! Suddenly however there seems to be some urgency attached to this request for family involvement right now.

Oh…. and OCC and OCCG are apparently/allegedly setting out the terms of reference for our involvement in this new Programme Board.  ‘Ticking a box’, Involving families when it suits seems to be the order of the day here now.

Co-production anyone?               


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Looking for a ‘positive’

I’m a pretty positive person and always try to look for something good in any situation. This has had its challenges in recent weeks, months, years. It’s difficult sometimes, but I always try.

In my work I see and hear some fantastic stories about how people are supported. How people with learning disabilities are being actively supported to live the lives we, as families all want for them. How families are involved and truly listened too, respected and treated as partners.

I also hear things that make me want to scream with frustration!

Connor’s death and the serious failings and neglect by those charged with caring and supporting him was the ultimate frustration. How could this have happened?

How could trained staff and professionals, people who must have gone into this line of work because they are ‘caring’ people, be so careless that a young man actually dies in their care? It still beggars belief!

The treatment of his family during his stay at STATT was sadly all too familiar. The ‘he’s and adult now’ line is used far too frequently in our world as either a ‘get out clause’ to make their (professionals) lives easier…don’t want those pesky parents thinking they know best when we’ve got qualifications an all that! …or its sheer ignorance of what being a parent (any parent) really means. I mean how many parents ever stop being a parent, ever stop worrying?….and even when your non-disabled kids turn 18, do you really think of them as truly a proper adult?

Then there was the ‘mother blaming’ . Even at the inquest into his death, the only defence there seemed to be was to deflect the blame to ‘the mother’ as Sara was disrespectfully referred by one legal rep. It makes me weep, because sadly this attitude is all too common.

From the moment your child gets a diagnosis (if indeed they get an actual diagnosis or even if there is no definitive one) judgements are made and files are kept. Your parenting abilities and you come under intense scrutiny by everyone…even strangers in the supermarket. And, God forbid you should disagree with a professional. Pin on that difficult ‘mother’ badge and be prepared to wear it forever if you do!

I use the word ‘mother’ because I am one and it’s usually mothers but, fathers get the reputation too of course. While fathers get accused of being ‘aggressive’ …mothers can get the reputation for being ‘over emotional’…’over protective’ ….and apparently both reactions can upset some staff/professionals. Instead of understanding the frustrations that may have led to this response and looking to their own practice its all too easy just to character assassinate the parent!

I could blog about this stuff forever, but it’s too depressing and I’m ranting now. And, I started this post attempting to focus on the positive!

What can be positive in all this, I hear you ask?

Well, tonight I went to a meeting. A families meeting arranged by the organisation that supports G. They’re called Style Acre….yes I’m naming them, because they bloody deserve a mention.

The meeting was arranged to introduce the new CEO. He happens to be someone I’ve worked with at Dimensions and I was really pleased he got the job  because he absolutely has the right values. (Even though he has some ‘big shoes to fill’ because his predecessor was amazing!)

It was a great meeting and it was so refreshing to hear a packed room, full of parents who, quite frankly were raving about the support their relatives get. They talked about how their relatives staff kept them informed and involved and how their kids couldn’t wait to get home after a visit back to them. G does this too and pushes me out of the door if I spend too long talking to his staff when I take him home. It’s a good sign to me that he really likes where he lives!

The staff talked about how much they valued the input and involvement of families. With a real passion for making the lives of people like G better and obvious sense of joy in the work they do! A real sense of we’re in this together, we’re listening and we will act on what you say!

And they don’t just talk the talk, they act and deliver. When I arrived I chatted to the manager of G’s house, (L) who had emailed that day to let me know that a care manager wanted to come and visit G to look at his support plan after a recent assessment. The Care manager hadn’t invited me and L insisted that I needed to be there. We arranged a convenient day so I could be but I couldn’t help think why wouldn’t the care manager want to involve me?

I’ve often spoken about G’s support team but it was fantastic to hear that my experience wasn’t exceptional….it was the norm for others there too!

It’s reminded me that what we are striving for, good working relationships and real partnership (that word was banded round more than once by a number of people!) is possible, with the right values and attitudes and has filled me with a little more sense of hope.

A glint of sunshine on a gloomy day!

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What makes a house a home?

I’ve moved house!

I’ve finally moved house!

God! It’s been a long old slog. The house went on the market last September, has been under offer since April this year and I finally moved in just over a week ago. Phew! The relief!

It’s all been very stressful, for the usual house selling/buying reasons, but it’s been very emotional too because this was a home I’d lived in for 22 years. It’s the home where I lived with Bob and where our children grew up. It’s also the place where he died! So many memories, so many happy times and extraordinarily sad ones too.

In truth it’s never really felt like home since Bob died but I loved that old place and it was a massive wrench to leave it. The girls were upset I was going too – hard to leave your childhood home whatever the circumstances.

I’ve been in my new home for a week or so now. It felt very odd waking up somewhere new with all my possessions around me but, it’s starting to feel like home and I think I’ll be happy here. (I’ll be happier when I get the heating fixed but it’s a minor issue really compared with all the stuff breaking in my old house.)

I’ve thought a lot about what makes a house a home, not least because while in the midst of waiting to hear whether I’d exchanged contracts and planning removals etc. I was running training for OXFSN. We are working with the brilliant My Life My Choice on our joint Quality Checkers project.

We are really WP_001442excited about this project and the best bit about it is it involves family carers and people with learning disabilities (‘experts by experience’) working together to check the quality of supported living services in Oxfordshire. The training was done jointly and it was great to see everyone working together with the same aims and values.


The first exercise we did in the training was to ask the team – what makes your house a home? And what makes a house not a home?

While everyone came up with similar comments, like a home being warm and safe and it being clean and comfortable, what struck me most was some of things the different things that the experts by experience came up with.

While family carers talked about having a nice garden and having space to relax the ‘experts by experience’ talked about – “living with people I  know and care about me”, “decorating my own room”,  “choosing when I want to do something”, “having my own key” and “choosing when I get up and go to bed”

I guess what upset me most about this was that these are all things that most of us take for granted. How can it really be home without those very basic things? Yet, for learning disabled people they need to be clearly spelt out to others.

I was so excited to get the keys to my new home and even though I had trouble with some of the modern locks and struggled to find out which key was for which door it wouldn’t have been my home without them. I hope everyone we visit has their own key (even if they can’t use it themselves)

The sad fact too is that most learning disabled people don’t choose who they live with. They get ‘placed’ where there is a convenient ‘bed space’. While efforts are often made to ensure there is the right match of people, we all know that you don’t really know whether you’re going to be able to live together until you actually live together. Ask anyone who has flat shared or moved in with a partner! For most of us, if it doesn’t work out, we can move out. But, learning disabled people have to rely on others –social workers, commissioners and the powers that be to make those decisions. And, it’s not always that simple! Funding comes into play and funding is in short supply as we all know!

When I looked for where I wanted to move too, it was my choice where I went. Obviously there were financial restrictions but even so I based my choice on what was right for me – good transport links and friends nearby. A downstairs loo for G when he visits and enough space for the kids to all stay when they come to visit. I didn’t get everything I wanted and had to make some compromises as we all do, but the basics were there and I was happy with my choice. And, even though being alone was something I’d had forced on me because Bob died. I chose to live alone. Few learning disabled people get that choice because of financial constraints, so getting the right match of people living together is even more important. In saying that if we really are promoting equality if someone really wants or needs to live alone then that choice should be offered too.

When G moved into his own home we felt that the people he lived with was the most important part of his support arrangements. It’s the first thing we looked at and agreed on. G likes living in a busy home and it’s important to him to have people around him and I’m happy to say that, through person centred planning and good matching he’s living with people that we felt he would have chosen were he able to tell us himself. Even when someone who originally moved in decided to leave the Provider took their time making sure the new housemate was a good match. It took almost a year but it was worth it. It’s worked well. They involved all the families too, just as they should!

Our Quality Checkers will be visiting people’s homes (with their permission). They are going to be looking at the quality of their lives and checking whether they really have choice and control over how they live and who they live with. Our eyes and ears are our best tools but we will be basing our observations on the REACH standards for supported living

  1. I choose who I live with
  2. I choose where I live
  3. I have my own home
  4. I choose how I am supported
  5. I choose who supports me
  6. I get good support
  7. I choose my friends and relationships
  8. I choose how to be healthy and safe
  9. I choose how to take part in my community
  10. I have the same rights and responsibilities as other citizens
  11. I get help to make changes in my life

All pretty basic stuff really but it will be interesting to see how much these standards are followed and applied. And, what evidence is available to support what we see and hear. Our checkers all have a clear idea what good quality support looks like and whether somewhere will have that homely feel. We can’t wait to get started!

I’ll let you know how we get on! But, in the meantime you might like our hear this brilliant song by Open Future Learning, called the ‘F word’ – it’s quickly becoming our Quality Checkers Anthem

The Quality Checkers project (a pilot) came about because of the deaths of Connor Sparrowhawk and Nico Reed and concerns raised by CQC about some learning disability supported living services in the county. Families and people with learning disabilities have been understandably worried and concerned about quality so this pilot has been funded by Oxfordshire County Council. We’ve also had the opportunity to speak to local Providers about what we’ll be doing and how we’ll be doing it. They welcomed the project, which should add another layer of checks to go alongside their own quality monitoring and that of CQC.

We are looking forward to getting started and feeding back our findings and we will keep you posted via the My Life My Choice  and OXFSN websites.


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Thinking of Connor

Like so many others I’ve spent the last two weeks watching the live tweets from the inquest into Connor’s Death, thanks to @LBInquest via the amazing @georgejulian

I couldn’t make the inquest because I’ve been moving house (no comparison of course to what Sara and her family has been going through, but stressful and emotional for its own reasons). I’ve hated not being there to support Sara but sadly it just hasn’t been possible.

The verdict was today. A damning verdict. “Serious Failings” A desperately sad course of events and further shocking revelations of just what happened along with new disclosures. I’m sure others will blog and comment on this far more eloquently than I ever could.

So, instead I wanted to share a couple of my memories of Connor.

My favourite memory is from when we visited the House of Commons for Mencaps’ Breaking Point campaign launch.


It was an eventful day. Including chocolate cake smearing on expensive suits and Andy from Little Britain impersonations courtesy of G, and singing happy birthday to Boris Johnson courtesy of M (filmed by BBC South Today)

When getting the taxi back to the station, the taxi driver asked us if we’d had a nice day! Connor in is usual way launched into… ‘Big Ben blew up! There were police and fire engines everywhere” (I’m paraphrasing but you get the gist)

“Blimey!” said the bemused taxi driver “I didn’t hear anything on the news about that!” – Classic Connor!!

It’s true to say that Connor really only (just about) tolerated kids like G and the rest of our merry band of ‘special’ kids. He never saw himself like them….I really liked that about him. He had aspirations. I guess the difficulty came when he voiced what probably lots of other people were thinking but were more socially aware so didn’t… “I hate those bloody disableds” still makes me chuckle as did the reluctance to come along to our get togethers. Although he did enjoy some of the cake available. And I love this pic of him with G and his chocolate fountain gift!

Gail, Guy & Connor

As a group of friends though we thought it was funny (parents of disabled kids tend to have a rather black sense of humour which you’re only allowed to share if you’re in the same club!)

While packing up my old house I came across a couple of old family video recordings. Many of course that included my late husband Bob (who died just 6 weeks before Connor) and one, when my daughter Ollie did a short film about kids club. Connor was there with his younger brother T. My heart skipped a beat (not for the first time watching it). It was such a happy day. So much promise of other happy days.

As I watched the case unfolding and heard the submissions from @paulebowen I couldn’t help but think…WOW! Connor would have loved all this! he’d have seriously loved his legal team. I’m wishing now he only had to call them because his mum had asked him to empty the dishwasher!

As a close group of friends (the life raft, along with the rest of our families) Connor was one of ‘ours’. We know it could have been anyone of our kids, brothers/sisters. Connor’s death shocked us all to the core and has left a huge hole in our hearts. We miss him. We hate what this has done to his lovely family. We hate the people who allowed this to happen. It should NEVER HAVE HAPPENED!!

The systems, processes and skills of the people working at STATT were clearly seriously lacking. The communication with his family or rather the lack of it however is indicative of everything that is wrong with the social care sector. It confirms to me why my role as a Family Consultant with Dimensions is so important and that everything we are trying to do is right but why there remains so much more to do!

I hope beyond hope that something good will come from all this. That Connor’s death will leave a lasting legacy. A legacy that includes (amongst lots of other things) the very real need to work in partnership with families.

#justiceforLB  #RIPConnor

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Fathers Day

I’ve never been a big fan of Fathers Day (or, Mothers Day or Valentines Day) I’ve always felt that if you love someone you don’t need a special day to celebrate this….just tell them you love themregularly. And, even if you’re not the kind of person who say’s the words easily, then show it. Actions speak louder than words anyway.

As I write this I hear Bobby’s words ringing in my ears…. “It’s all about the commercialism” he used to say. “It’s all about the card sellers, the florists, they make us feel we have to do these things otherwise we’ll look shit- it’s all about money”.

Grumpy old Bastard!

I used to think his rant was an annual excuse not to buy cards or presents…but he really had a point and as the kids grew up we never really made a big thing of any of those days.

He always told the girls not to bother about Father’s Day.

In the two years since he died though I struggle with this day. A day that celebrates Dad’s. A day when wherever you look there is some reminder (not that we need one). It started a couple of weeks ago and will reach a crescendo on Sunday, when Facebook will be filled with pictures of happy people celebrating their dads – telling them how much they love them.

Don’t get me wrong. I think it’s lovely that people do this, but it’s only in the last two years that I’ve realised how painful this day is for some people. I find it agonisingly painful. Because although I still have my Dad, my kids don’t have theirs. He died. And they were way too young for that to happen.

I know that they are thankful that they at least got to know him as adults (because they’ve told me) and it would have been harder if they had been younger but, every time I hear the words “Fathers day” I wince.

I feel incredibly lucky that my own Dad is still here. I didn’t think he still would be. At 32, when I was just 4 years old he had his first heart attack. A few years later he had a massive one, which nearly killed him. Throughout our childhood me, my Brother and Sister regularly witnessed the ambulance being called and Dad being whisked away to the hospital.

At 50 the family had a big party with a cake that said “50 not out” He’d done well to get to 50 – we thought.

On the 10th of July he’ll reach the grand old age of 80!!! BLOODY AMAZING! And to mark it we’re all heading ‘up north’ for a party to celebrate.

I’m thinking now of all the people out there who have or have had poor role models as dad’s …being a Father doesn’t mean you’re a good dad does it and you hear some shit stories of, quite frankly, shit dads.

So I’m looking for the positive in all this and here it is…. As well as their good looks, my kids Dad left them with the feeling that they had always been loved. They have happy memories of him and they had fun with him. While this makes him not being here all the more difficult they have the knowledge that their Dad while he was here was a funny, charismatic fella, who people really liked and loved. Someone with integrity and honesty ….and someone who is missed by so many, not just his family. That’s not a bad memory to have of your Dad now is it?

So, this year on Fathers Day I’m trying to be thankful. I’m thankful that my lovely Dad (defying all odds) is still with us. And, I’ll always be eternally thankful that my kids had the Dad they had.

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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!

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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

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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.

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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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