Friday, 16 September 2011

A #Specialsaturday Post - Uncertain Times & Embarrassing Moments

The meeting we had yesterday to plan Chrissy’s future care was chaotic & disheartening. There was a roll call of apologies for absence – people worked on different days, a ward ‘crisis,’ someone away on a training etc. One of Chrissy’s care managers was present but he has no influence as his authority are not paying for her care. No one from the commissioning authority (funding ‘without prejudice’) attended. The psychiatrist has been unable to get hold of anyone there, which means we can’t plan Chrissy’s future.

I’ve already blogged about the funding dispute that’s leaving Chrissy in limbo. It will take a long time to plan her next placement as we need to get it right this time. A robust healthcare support infrastructure needs to be in place for starters. Another placement breakdown would be disastrous for Chrissy. The appalling state she was in through the latter part of 2009 still haunts me.

The hospital admission in January 2010 has improved Chrissy’s life. She is far more stable than she was 18 months ago but these changes have plateaued over recent months and we fear there will be little or no further improvement because the institutionalised environment isn’t geared up for her autism. There aren’t enough stimulating accessible activities offered. For months we were promised sensory integration therapy (‘The missing piece of the jigsaw,’ Chrissy’s speech therapist had said in March). Yesterday we learned that there had been a U-turn – they can’t supply it as part of the package; extra funding will have to come from the commissioners - the ones they can’t get hold of!

The meds changes took months to start due to all sorts of reasons (including the funding dispute) but we can’t thank Chrissy’s neurologist & psychiatrist enough for flagging up their concerns about one of her anti-epileptic drugs, Topiramate. We marvel over how much she’s ‘woken up’ since it was reduced from 50mg a day to 15mg. She is far more aware of her surroundings, and full of quirky observations & funny comments again. Last night, I was having eyelash extensions done for a special occasion. Chrissy was in the same room, playing quietly on the computer under Ian's watchful eye. Suddenly, she sat bolt upright, & announced: 'I poo myself in the kitchen.' The lady doing the eyelash extensions froze then we both collapsed into giggles as I explained that Chrissy probably felt the urge to go but had her tenses mixed up. There have been many potentially embarrassing moments like this but we just find them endearing, entertaining & funny. It's a good sign as it shows her irrepressible personality is no longer being clouded by too much - or the wrong - medication.

Embarrassing moments are part of what makes Chrissy who she is. We welcome them back!

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the Facebook page -
Following on Twitter - @Specialsat and retweeting hashtag - #specialsaturday
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Friday, 9 September 2011

A #Special Saturday Post - How Having a Special Needs Child has Changed My Life

I've already written extensively on here, & in my book & parent's perspective chapter about the bigger picture of how having a special needs child has changed my life. Here I'll just give you a snapshot....

As soon as she walked through the door yesterday afternoon Chrissy demanded 'mummy's computer.' She then took over my office & nicked my reading glasses. In the photo she's watching Andy Pandy, which she loves. 'Bye mummy!' she called, no doubt hoping I'd go away so she could hack into my laptop. Left to her own devices, she manages to delete programmes and generally cause cyber mayhem.

Cranky spells peppered Chrissy's stay but, just as I thought she was going to kick off, the mood passed & she became jolly & talkative. Yesterday evening, she sat on the settee, sandwiched between Ian & I, with her catalogues & cookery books spread out around her. She nagged us to 'find the girls' in her catalogues. We found pages of them. 'No GIRLS,' Chrissy pressed on querulously, bending her fingers back & twisting her hands together - a bad sign & an ideal time to try out her new big fat weighted blanket.

It did the trick (but we still don't know what sort of 'girls' she wanted).

'Tuck it my knees,' demanded The Diva (our new nickname for Chrissy). 'Make it square.' Then, when she was swaddled in it up to her chest she ordered us: 'Hold my hands.' Remembering how she likes pressure on the outside of her hands, I gripped one of them tightly.

Peace reigned at last. We even caught the last 10 minutes of Outnumbered, which kept Chrissy amused. She smiles with benign indulgence when we laugh & sometimes joins in - but I suspect she finds the sight of us funnier than the object of our mirth. She's very inquisitive & sometimes appears to be as intrigued by our behaviour as we are by hers.

Today, Chrissy kicked off because I wouldn't let her back on my laptop. She had switched it off & done something to our anti-virus software, which Ian had to reload. I videoed her screaming on the floor with one leg up in the air then replayed it to her after she'd calmed down. She watched, transfixed, but without expression. 'What's Chrissy doing?' I asked her. 'Crying,' she said matter-of-factly. So what did I learn from this exercise? Bugger all but it was worth a try. It might have made her realise how silly it was for a grown woman to have a toddler-like paddy....

Thursday, 8 September 2011

The Real Face of a Carer - Guest Post by David McKendrick, Social Work Lecturer

David sent me this moving piece he wrote for Professional Social Work Magazine, Scotland. He makes a heartfelt plea for social workers to listen to the experts - the carers themselves - when assessing caring situations. His subject, Crawford, became a carer to his wife of 31 years after she was knocked down by a car, & left with life-changing brain injuries. For me, their story highlights how anyone can find themselves plunged into the role of carer.

“What? The true face of carers? This is the theme of Carers Week? Listen, don’t ask. You don’t want to know. If you did have a clue what a carer’s true face is, it would frighten the pants off you!”

This is a quote from Hugh Marriott, a carer and author of The selfish pig’s guide to caring, about Carers Week which ran from 13 to 19 June. If you want to know if this is the truth then ask Crawford Fallon. I did and it is. For the last 10 years Crawford has been the sole carer for his wife Elizabeth, who was brain injured after being involved in a hit and run accident.

Elizabeth’s injury came after a night out. The couple were walking home when she was hit by a car. In an instant their lives changed. There was no warning, they were not consulted and the repercussions of that night have changed their lives completely.

Before the crash, Crawford and Elizabeth were happily married and living in their home town of Shotts in North Lanarkshire. Elizabeth was a nurse specialising in working with infectious diseases and Crawford was developing a career in the mining industry.

Crawford had to give up his job and become a full time carer for Elizabeth. Elizabeth’s injury makes her unpredictable, she can become aggressive and can shout and swear. On occasion she has been violent and has hit Crawford. Elizabeth has hurt herself and talked of suicide. Initially, there were many offers of help from family and friends but these have all stopped. People are embarrassed by Elizabeth’s behaviour and don’t like being seen out with her.

Like many carers, Crawford attends to Elizabeth’s every needs. Over the years Crawford has kept an intimate diary detailing what he has done. He has developed a whole new range of skills, he is an expert and there is quite literally nothing that Crawford does not know about caring for Elizabeth.

Before Elizabeth’s accident Crawford had never cared for anyone, least of all someone with a brain injury, so he has had to learn. This has often been by trial and error. Crawford has made mistakes and each mistake has been costly, resulting in either his or Elizabeth’s distress - or both.

Crawford’s learning has been unsupported with little help. There have been no university tutors, practice educators, senior carers or colleagues to learn from. There has been no safe learning environment and no boundaries. Elizabeth’s personality can change seemingly without warning. But Crawford has become expert at reading the signs - he has to be.

Recently Crawford was visited by a social worker who was completing an assessment. Like all social workers he had a deadline, he had a caseload, he had to complete all the relevant paperwork and had to fill in all the computer screens. Crawford went out to make him a cup of coffee and on his return the social worker was asking Elizabeth how she would feel about someone coming in to help care for her.

Elizabeth became angry. This can happen and when it does Elizabeth can shout and swear or even become aggressive. Crawford knows this, he is the expert. If you read his diaries or ask him to share his expertise he will tell you. Crawford used all of his patience to explain to the social worker that working with Elizabeth requires skill and tact. Elizabeth does not understand the concept of a deadline, or of a report or the need to have your case notes updated.

Crawford has been here before with doctors who have offered diagnosis after diagnosis. He has been there with occupational therapists, dieticians, psychologists and psychiatrists. Amidst all of this Crawford is still engaged in a complex legal battle over the original injury. Losing this could put his home at risk as he and Elizabeth exist on state benefit. Crawford has to care and fight, and balancing both of these is becoming an ever more challenging task.

Crawford needs to be organised - for him this is the key - and his diaries help. He has by now experienced most of the challenges involved in caring for Elizabeth. There is not much he has not dealt with. He has dealt with tantrums, violence, tears, depression, anger and frustration, and understands all of these.

He understands all to well his own burden. Fighting on all fronts is draining and he too is feeling the pressure. Caring for Elizabeth saps his energy and creativity. Like many carers he feels he is the only one who can care for Elizabeth.

He finds it easy to share his knowledge and expertise but hard to give up his role. He worries that someone else won’t care for Elizabeth properly. He worries that the progress they have made will reduce if someone else comes in. He worries that if someone else comes in he will lose his identity.

Crawford likes to keep fit. He finds solace in the solitary pursuit of running. He uses this time to refresh himself, to de-stress, to reflect on what has worked and what he might do differently. Crawford needs re-assurance. He needs patience and understanding and he needs to be involved. Crawford needs to be recognised as the expert.

Crawford and Elizabeth need social workers to understand that their relationship is intimate, that amidst all the frustration and anger there is a bond that has been challenged and strengthened by adversity. Crawford and Elizabeth need each other and they need social workers to understand this.

For Crawford, the important thing is that each professional has an understanding not only of their role but of how all of them work together and understand each other. Co-ordination is the key. If professionals took the time to read up on Elizabeth before they visited her they would understand that change frightens Elizabeth and that when she is frightened the fight or flight instinct takes over. Trying to put together a package of support that will have an impact won’t happen under these circumstances.

Crawford needs social workers to talk to him. He knows the Elizabeth’s behaviour can put people off. He also knows that this can be avoided. New ideas or changes need to move at Elizabeth’s pace, she needs to be consulted and her views sought. Crawford needs to be there to help Elizabeth to understand what is being suggested. After all of these years Elizabeth trusts Crawford implicitly. He knows and she knows he knows.

In Crawford and Elizabeth’s world the professional pressure for social workers matters little. They are sympathetic. They know that social workers work in a busy and demanding environment, that they are often blamed and they get bad a press. All of this is relevant but not important. For Crawford and Elizabeth, these challenges are professional not personal.

Crawford and Elizabeth’s challenges are personal. Their lives are dominated by Elizabeth’s needs and Crawford’s desire to meet them as best as he can. Crawford does so because he loves Elizabeth, their bond is deeply personal and goes beyond any challenge that life has thrown at them.

Crawford has accrued knowledge and expertise. This has been developed in the most pressured and challenging environment and Crawford has retained all of this knowledge. He is desperate to share it. There are no issues of confidentiality - it is theirs and if it helps it is yours.

Yet in helping Elizabeth gain more independence there is a risk for Crawford. If Elizabeth gets the support she needs he needs to re-define himself and there is a risk here. Such a transition will prove difficult. While Crawford and Elizabeth want this, they know that getting it will mean another change. They know this but they still want it.

Crawford has aspirations and wants to go back to university. He sees a future but he needs to know that the present is safe. In order for this to happen, social workers need to listen to Crawford and to learn from him.

Social workers need to ask him about Elizabeth. They need to ask him about him. They need to ask them about them. Social workers need to talk to others such as psychiatrists and dieticians. For Crawford, social workers need to value the uniqueness of his experiences and of his relationship with Elizabeth.

Carers do not feel connected to many of the organisational pressures that are around for social workers. They want a service that meets their needs. The financial pressures of local authorities are not immediate to them. Why should they be? The pressures they are experiencing are just as great. They are personal pressures, everyday challenges to which there is no end in sight. Crawford and Elizabeth need social workers who can listen to and learn from them.

Saturday, 3 September 2011

A #Specialsaturday Post - My Special Needs Child's Greatest Achievement

With exquisite timing, a story was tweeted about the chaos caused by local authorities arguing over funding responsibilities when a disabled person moves to a different area - so called "ordinary residence." I clicked on the link &, to my surprise it was our story. I had emailed various disability organisations about the funding wrangle over responsibility for Chrissy's care so assume it must have come from one of them.

The story, Ordinary-residence; extraordinary-mess
was posted by Graham Faulkner, Chief Executive, Epilepsy Society, Vice Chairman Voluntary Organisations Disability Group. It highlights discrimination against thousands of disabled people who can't move where they need or want to due to funding rows between local authorities. It also links in perfectly with this week's #Specialsaturday theme. One of my special needs child's greatest achievements is raising awareness of failings in the system, sadly by experiencing so many of them herself.

It wasn't simply a case of a wrangle between two local authorities - CHC (continuing healthcare) was also involved & argued that Chrissy's predominant need was social care, not health. Their nurse assessor confided that they'd used 'outdated assessment criteria designed to assess people with dementia.' I am awaiting a response to a complaint I've made about this issue.

Because Chrissy was moved to a 3rd local authority after a sudden, heartless eviction from a residential home, the dispute became even more complicated. It led to delays in Chrissy getting effective care, support & medical treatment, & endless meetings with commissioners, care managers & healthcare professionals. I took legal action three times & went to the local newspaper to resolve the stalemate situations Chrissy was put in. Meanwhile, Chrissy's mental health was deteriorating. She had made herself bald on one side by ripping out chunks of her hair, & spent hours self-injuring, hitting out at others, & screaming for hours. Increasing numbers of carers were being put in to manage her behaviour but Chrissy's quality of life was shit.

Last year, we made a complaint to the three authorities involved & eventually got a joint response from two blaming the third authority for it all. We are awaiting more responses - about the CHC assessment & from the third local authority - before we can proceed further.

Legal action settled the dispute temporarily in order for Chrissy to be funded at an assessment & treatment unit but it hasn't been settled long-term as the funding agreement was 'without prejudice.' The dispute continues with no end in sight as an important meeting to discuss Chrissy's future looms.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the facebook page - Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday Reading and following the Special Saturday Blog -">