Caring Responsibilities

Mark Williams Excerpts

Wednesday 15th June 2011 Westminster Hall

[Mr Mark Williams (Ceredigion) (LD)]

Thank you, Mr Streeter. It is a pleasure to serve under your chairmanship this afternoon. First and most importantly, I congratulate the hon. Member for Edinburgh East (Sheila Gilmore) on securing this debate. It is the most timely debate that we could imagine, given that this is carers week. The hon. Members for Stretford and Urmston (Kate Green) and for South Thanet (Laura Sandys) and I were asked by Carers UK to act this week as carers’ ambassadors in our constituencies and elsewhere to promote some of Carers UK’s key messages.

On the true face of carers, the reality is that there are so many different faces, stories and anecdotes. As we have heard, there are 175,000 young carers. There are carers in work or grappling with the prospect of staying in work while managing their caring responsibilities—I will say a little about that in a moment—as well as elderly carers. We receive many different stories in our e-mails and postbags every week.

Let us celebrate carers week. It is about celebrating the invaluable work that carers do and showing our appreciation of those who give up their time, sometimes at a cost to their own health and financial well-being. That message has come loud and clear from many Members in this debate, and I echo it. I will focus my remarks on some of the personal experiences that constituents relay to us.

We as a society unquestionably rely on carers to provide a service, and there are clear benefits to people caring for their loved ones: not only do they make them more comfortable, but they reduce pressures on health and social services. I was privileged this week to launch a carers week event in my constituency. It involved the book “Dywedwch ‘’Dwi’n iawn’…a’i Olygu”—the hon. Member for Newport East (Jessica Morden) might be able to understand that—or “Say ‘I’m Fine’…and Mean It”. It is a good book that promotes some of the services available in my constituency and more widely. It was produced by Ceredigion council and a local project called Mind Your Heart to give carers advice on maintaining their physical and mental health. It is an excellent project. I agree with the hon. Member for Banbury (Tony Baldry) that the voluntary sector has done and is doing much, although that is being impinged on by the scale of the decisions made here and, in the context of my constituency, in the Welsh Assembly.

The outcome of a Wales-wide survey of carers—we heard the UK figures from the hon. Member for Worsley and Eccles South (Barbara Keeley)—revealed the extent of their concern and worry. As many as 71% of carers have suffered health problems as a result of caring, 64% have had to give up their career ambitions and aspirations since taking on their caring roles and 63% of carers were surprised at how hard it is to be a carer. Sometimes, at comparatively short notice—even very short notice, such as after a car accident—carers suddenly discover that they must undertake a life-changing role. Some 43% of carers have a disability, condition or illness themselves. I met an 88-year-old constituent on Sunday evening who had cared for his wife, also in her 80s, for many years. Carers week is an opportunity to highlight such issues and concerns, given the inevitable decisions on the deficit that the Government must take.

The title of this debate, commendably, refers to the effect of spending reductions on families. I will address that, but it is important to recognise that some decisions and prospective decisions made by Government could be good news for carers. However, there is a great deal of work to be done. The Government are embarked on a consultation on proposals to extend the right to request flexible working. I introduced a ten-minute rule Bill earlier this year to extend the definition of carers within current flexible working regulations and provide for so-called day one rights, allowing carers to request flexible working from when they start a job, rather than after waiting six months. I launched a lottery-funded project in my constituency with Crossroads Care and various local chambers to assist carers and boost their confidence in returning to the labour market where their circumstances permit it. The challenge of finding the confidence to return to the labour market after caring should not be understated.

We have had good news that the Government plan to introduce a right for all workers to request flexible working, which is to be welcomed as a big step forward. The Government have recognised that many successful modem businesses acknowledge the importance of respecting that their staff will have other responsibilities and that the best way to ensure that they remain motivated and reach their potential is to give them the flexibility that they need. It is a big issue. More than 150,000 people in Wales who are in paid employment have unpaid caring responsibilities. However, the Government have been less forthcoming on day one rights. There is a perception that it is somehow unfair for people who have just been appointed to a job to request flexible working. I contend that people should have the right to request flexible working at the outset. Many of us share the view that if carers wish to work, they should be given as much support as possible, but there is a barrier.

I have one minute, so I will rattle through my next points. I agree with colleagues about the concerns expressed by the hon. Member for Banbury, and consistently by Labour Members, on the arrangements for carer’s allowance, changes to disability living allowance and the uncertainty involved. As the hon. Member for Edinburgh East said, clarity is lacking on those matters. I also agree with the principle that if we embark on major changes, there must be a process for monitoring, evaluating and reporting back on them. Work on the awareness of benefits is fundamental as well.

To return to my original point, a quote from a carer in my constituency illustrates why carers week is so important in highlighting cases. A lady in my constituency who will remain anonymous cares for her disabled son. She says:

“I note the activities locally for carers week in Ceredigion, in which you are involved. I cannot attend such activities, as I am trapped at home looking after my son. When I do have time without him (when he is at school) I am at work trying to retrieve our family’s financial affairs from the effects of my son’s disability and trying to keep some semblance of a life for myself apart from my son. Disabled people and their carers are very often voiceless for these reasons. This sounds dramatic, but it is a very small divide between coping and not coping. And the implications of not coping are horrific.”

That is why this debate is important, why carers week is important and why it is crucial for all of us to continue to press the case for carers’ rights.

Child and Adolescent Mental Health Services

Mark Williams Excerpts

Wednesday 7th July 2010 Westminster Hall

[Annette Brooke (Mid Dorset and North Poole) (LD)]

I congratulate the hon. Member for Stalybridge and Hyde (Jonathan Reynolds) on securing this debate, and providing comprehensive coverage of the vital issues. I also congratulate the National Autistic Society on its “You Need to Know” campaign, because we must make services work better for people with autism. An important aspect of that is to make CAMHS services throughout the country work effectively for children with autism.

I have been contacted by constituents asking me to support the campaign, and I want to begin my brief contribution by describing some of their experiences, because they illustrate all the general points that the National Autistic Society makes. One constituent wrote:

“I first realised there was something wrong with Jon’s development at the age of 2 but was told by my Health Visitor that I was comparing him to his older exceptionally bright brother and that he was fine. I continued over the next 2 years to say that ‘something wasn’t right’ until she eventually agreed to get his hearing checked—he wasn’t interacting with me, seemed in his own little world and wouldn’t even respond to his name. His hearing was fine so she referred him to a speech therapist as he didn’t talk much but after a few weeks of attending, he was discharged saying he was ok. It was only once he’d started school that he was referred”—

to the local hospital—

“But the consultant…decided that Jon must have a form of epilepsy as he would ‘switch off’ in the playground and was oblivious to his surroundings. He did months of tests but they revealed nothing”.

Eventually, Asperger’s syndrome was diagnosed, and my constituent went through years of seeking help. She continued:

“I have no idea what or how to access services which may or may not be available to Jon especially CAMHS. He is 17, 14 stone and 6ft 3, and can have tantrums like a 2 year old—just as sudden and just as violent. I asked my GP if there was some kind of Anger Management course available to him or if he could see a psychologist that could help him. He said I would have to see Jon’s consultant”.

And so it went on. My constituent believes that training is needed across the board for GPs, nurses and psychologists, as well as with direct CAMHS services.

Another constituent who works with children and young people with autism said:

“I feel that many health professionals are unaware of the battles faced by those living with autism. I have often found those from outside agencies quite hostile towards our clients…not realising that they need to be treated differently from neurotypical people. Most of these students have diagnosis in other things such as Obsessive Compulsive Disorder, ADHD and Pathological Demand Avoidance and attachment disorders.”

They say that it is

“hard to find people with the right expertise to deal with these disorders as they usually have not dealt with people with autism before, leaving these other diagnoses untreated. Add this to the fact that the provision for all of these services usually drop away once a person with autism reaches 19 and are transferred into adult services and it seems we are failing those with a diagnosis”

of autism.

Another constituent said:

“My experience with CAMHS for Sam has been quite negative. We saw an ASD Nurse Specialist from CAMHS for about 6 months. He knew very little about autism, in fact he used to borrow books on autism from parents”.

Another constituent wrote:

“We are consistently told by professionals that they are severely overstretched which from personal experience and talking to other parents leads to very few families receiving adequate support…Maybe if money was invested on these children as they deserve…then they would be more likely to develop into functioning adults who are able to contribute to society in a positive way rather than developing into adults with mental health issues who are totally reliant on the state.”

Those four experiences sum up many of the issues that we are debating.

Autism is not a mental health problem, which makes it difficult for people to access appropriate services. As we have heard from the hon. Gentleman, a large proportion of children with autism have mental health problems, which may develop because of the symptoms that they express and subsequent interaction with other people. They may become more socially isolated at school because of their characteristics. The problem snowballs if the symptoms of autism are not identified early, and the child’s journey does not include trained people who understand its complexities and varieties.

[Mr Mark Williams (Ceredigion) (LD)]

The debate is rightly concentrating on the inadequacies of CAMHS, but my hon. Friend knows of my interest in teacher training and teachers’ awareness of identifying the characteristics of autism. There is understandable frustration among teachers at the lack of training facilities and opportunities available to them.

[Annette Brooke]

My hon. Friend and I, along with many others, have worked hard on education, and we are slowly making progress. Today’s debate takes us further afield because we have to get the whole package right for children with autism.

Being mindful of the time, Mr Benton, I would like to touch on two issues. First, I would like to emphasise the need for training for CAMHS professionals, which is vital for all the communication issues mentioned by the hon. Member for Stalybridge and Hyde. The issue is not straightforward, which means that there must be training; there must be flexibility, patience, skill and understanding. The local CAMHS commissioning process is designed to identify and address skills gaps in the local work force. What steps will the Government take to ensure that such gaps are identified and addressed with regard to autism?

I have been involved with the Every Disabled Child Matters campaign, and one area of concern that we have identified is the falling apart of services for disabled children during the transition period. There is a lack of forward planning for the transition, starting about age 14. That is particularly true for children and young people with autism, because they are likely to require ongoing mental health support and to need a smooth changeover between children’s services and those for adults. One issue that I have with children’s trusts is that in some local authorities, there is a great dichotomy between children’s and adult’s services. The best local authorities manage the transition well, but there is the potential for people to fall through the gap. How do the Government intend to ensure that CAMHS and relevant adult services work together to plan appropriate ongoing support for children with a mental health problem and an additional disability, such as autism, and for all young people who require ongoing mental health support?

--- Later in debate ---

[Mr Mark Williams (Ceredigion) (LD)]

I thank the hon. Member for North West Durham (Pat Glass) and my hon. Friend the Member for Brecon and Radnorshire (Roger Williams) for the speed with which they spoke. I intended to make a bigger contribution about some of the good precedents and good practice that we have experienced in Wales, in the hope that the Minister might have a look at that, but I shall just highlight the launch on 28 June by the Welsh Assembly Government of their new child and adolescent mental health strategy and the work commissioned by the Assembly Government from Professor Sue Leekam of the Wales Autism Research Centre. It is undertaking evaluation of the assessment and diagnosis of children with disorders on the autistic spectrum, which will analyse and strategically examine CAMHS provision and many of the inadequacies of that, particularly in professional training, which we have heard about from hon. Members.

I wish to highlight also the work being undertaken by the Betsi Cadwaladr university health board, which operates in north Wales, to develop a register for children and young people with autism. I applaud what the hon. Member for North West Durham said about the lottery of service provision, but the strong message is that we must identify the extent of the challenges that face the nation. The problem was not addressed by previous Governments; I hope that it will be addressed by this one.

I end with a brief anecdote. We have heard some powerful stories this afternoon. My earlier intervention about teacher training was deliberate. I spent 12 years in the classroom and I always realised that, even as a professional, I was sometimes failing the children in my care. The problem of the little girl who used to wander around the playground with no friends should have been addressed, but teachers are not often equipped to do so. The fact was that when we told her, “Don’t touch the hot boiler in the corner of the room,” we knew that she would probably end up touching it and burn herself. I should have been equipped to deal with the many problems that that girl presented.

However, there are huge opportunities, which is a point that was made strongly by the hon. Member for Stalybridge and Hyde (Jonathan Reynolds) and others. If we create the right environment—a nurturing, caring and enriching environment—in our classrooms and in our health service provision, people on the autistic spectrum will be able to make a huge and valuable contribution to society.

I am sorry for speaking so quickly, Mr Benton, but thank you for allowing me to contribute.