After a relaxing Christmas break we’ve already had a great start to 2012.  This week sees the launch of a new website and blog www.createdbyparents.com that my parents have set up to support other parents of children with learning disabilities.  My folks felt that even with the ever-expanding amount of information available on the internet, finding information and advice specific to the transition from Children’s Services to Adult Services for people with complex needs was just as difficult as when they went through it with Laura all those years ago.

This is a particularly hard time for parents, children, siblings and friends – they have to make decisions that can impact the whole family and potentially change their way of life that they have been used to for decades.  As someone turns 18 they become an adult and their rights change dramatically as do their wishes, dreams and goals.  My parents hope to be able to offer advice and guidance and a good dose of hindsight to families going through this.

Thanks in advance for your support and please do pass on the website to anyone else you think might be interested.

Have a great 2012!

As possibly mentioned in an earlier post, my good friend Thom a veteran father with 2 children told me that the second baby is at least ten times as hard on the parents as the first. I can confirm that in our little experience this certainly has been the case.

Well at least for a period of several weeks that have now blurred, where a relay of sicknesses played their part, testing our already depleted energy levels. However things are now looking brighter, Zara is 6 months old, smiling has now replaced crying, and without being too cocky, I think we’ve hit some light at the end of the tunnel.

In the dark periods we did manage to grab some brief moments of sanity, meeting up with old friends and going away for the odd weekend with the children. We even managed to steal ourselves to the theatre where of all people, we saw the ‘One to One Show’ hosted by Gyles Brandreth– he used to be on TV-AM wearing bad taste jumpers, became a Tory MP and is still a regular on Channel 4′s Countdown; Radio 4′s Just a Minute and BBC One’s The One Show. We were the youngest in the audience by at least 30 years and fortunately on this occasion weren’t seeing Jimmy Carr, as we were sitting in the front row and Kirsten was called up on stage to be his conversation buddy. I have to say that he was the perfect tonic and it pains me to say, but Gyles Brandreth may have been the turning point when life started once again to become more manageable.

A couple of weeks ago I caught the tail end of an excellent program on Radio 4 which I’ve been meaning to share on here but caught it again last Monday quite by chance. Julie Fernandez who played Brenda the wheelchair user in ‘The Office’, is in real life an advocate for disability rights.

The programme  Caring too Much, explores the complex relationship between disabled child and parent carer. It is certainly thought provoking and emotive and is a must for anyone facing these issues in the near future.
To hear it, click on the link and fast forward past the news:

http://www.bbc.co.uk/programmes/b0138vgk

http://www.guardian.co.uk/society/joepublic/2011/jun/22/private-hospitals-winterbourne-view-learning-disabilities-should-close

Fortunately Zara’s putting on good weight and the general sleep deprivation has yet to hit the massive lows, all the same exhausting –  less for me and more so for Kirsten!

We’ll be planning to go up to Lincolnshire soon to see Laura and introduce her to her new niece.

For those who may have missed the programme:

http://www.bbc.co.uk/iplayer/episode/b011v1bn/You_and_Yours_14_06_2011/

Thirty-two years ago, my sister Laura was born; soon afterwards, she was diagnosed with a complex learning disability. My parents were told: “She might live, she might not, but by the way, good luck.” At each stage of her life we have tried to get the best for Laura, but when it came to caring for her in adult life, the options available didn’t measure up to what we believed she deserved. So we created Home from Home Care, now a small group of residential care homes providing care for some 40 people from over 21 local authorities with epilepsy, autism, cerebral palsy and a range of other special needs.

After a decade working to help young adults like Laura live a fulfilling life, I was appalled at the abuse recently uncovered by BBC’s Panorama at the Winterbourne View home in Bristol. Vulnerable residents there were verbally and physically abused. One was doused in cold water as a punishment. Eleven people were arrested and the government has, rightly, ordered an inquiry.

But poor care not only consists of such outright cruelty or neglect: relatives have also come to dread the sort of uninspired “care” in which their loved ones are not actually being abused but lead lives characterised by boredom and lack of achievement. Working with a clinical psychologist, we are creating a blueprint for good care that could be replicated by organisations big and small throughout Britain.

One of the problems with the current model is that it has become very property-focused — as the Southern Cross collapse has demonstrated — with care often become effectively the “tenant” of a leased building. But financial struggles can help business focus on what really matters. Three years ago the business was hit by the credit crunch. As our bank struggled to stay afloat, it cancelled some of our funding, jeopardising our ability to pay our staff. During the next nine months, battling the perfect storm of financial crunch and a slowdown of placements from local authorities, we had to get very real about making our business work. There was only one way to do this: to concentrate on quality of service.

When we created Home From Home Care we had one goal: to raise the benchmark of the standard of residential care for adults. We believe we are some way along that journey which can set the framework for the future for care in the UK.

Three years ago we were hit by the credit crunch. As our bank, a leading lender in healthcare, struggled to stay afloat it cancelled the final tranche of our funding jeopardising our ability to pay our staff.  During the next nine months battling the perfect storm of financial crunch and a slow down of placements from Local Authorities, we had to get very real about making our business work.  There was only one way to do this: to make it more specialist and competitive.  We also had to be more effective in targeting our market – parents from all over the country who share similar values and aspirations to our family.  This creates an enormous expectation from them about the quality of the service we have to deliver.

There is good care and there is bad care.  The reason you have good care is good people working intuitively, supporting people to lead more fulfilled lives.  They are able to do this despite very basic systems.

Bad care happens for the smallest of reasons that escalate.  Take for example, someone who can only communicate the fact that they have a stomach ache by lashing out at a member of staff.  This might simply be a case of unmonitored constipation which could have been checked in a matter of seconds, but in the absence of this simple task taking place daily, the outcome is challenging behaviour. Under current systems this would be recorded as an incident rather than a failure of care.

The bigger aspect to providing good care is encouraging people to participate in meaningful activities and events that are not only beneficial to their mental and physical wellbeing but also build their independence and broaden their potential.  Take Laura, ask her if she would like to go for a swim and she will look at you as if you are mad and then say no.  Giving her the option and empowering her to make a choice by rephrasing your question in the first place to make ‘no’ not an option.  Asking the question “shall we go swimming or ice-skating” is such a subtle change but will make the difference between someone spending the day watching TV and being out and about.

Professionals, e.g. psychologists, therapists and leading lights say “we need to do all of these things” but this does not filter down on a day in, day out, nuts and bolts, practical level.  Our whole focus is on making this happen.

We are creating a transparent care system (TRACS) which is a framework to link the theory of good care to practical delivery.  We are doing this by working with a leading psychiatrist and psychologist to better understand the theory and then engaging with our staff team of 160, as we know someone within the team will be intuitively delivering the specific outcome.  For example, we have identified some 140 ‘Management Inputs’ that affect the day-to-day running of the home, from making sure the printer is working to print out the care plans to ensuring all people in the home get to the activities that they are doing that day. Then there are 120 ‘Care Inputs’ that directly affect the wellbeing of each person we support.  Next, it is important to match the right staff with each person, a process that produces 80 considerations for each member of staff with a similar number for each resident.

This equates to around 5,000 variables which directly affect the smooth running of each of our homes, the lives of those that live there, and their active days.  Each support worker is given a number of responsibilities and tasks (based on the variables) which they have to do on either a daily, weekly or monthly basis. This is the real crux of the issue, because in many care settings there is little management and structure for workers.  Not only does this mean things can be measured but the roll out of the IT system is turning us from a reactive to a proactive organisation.

The IT system allows you to take a snap shot of the business at any point e.g. financial KPIs, training, recruitment, HR and care. In the context of care, the benefit of our system is that instead of a care plan being on a shelf in a care home, anyone with the right access permissions can view it. For example, the Quality Assurance Manager can look up what a person should be doing and cross reference this with what is actually happening. The system holds data on everything about each person e.g. what their favourite food is, what they like doing, what their goals and aspirations are, and obviously their assessed needs. The advantages of this being on a live system rather than filed away on a piece of paper somewhere, is that it is a dynamic profile that can change as a person’s needs and life changes.  .

To anyone in business, this seems like a common sense approach.  But for the care industry this has not been done before, and the IT systems simply don’t exist that give an holistic approach, as in reality they tend to be focused solely on financial KPIs.  We know that by electronically ‘evidencing everything’ and creating systems that give better outcomes, we are starting to raise the benchmark as we set out to do.

People often ask if we have an exit strategy.  Our inspiration is Laura and her needs will never go away; we are in this for the long term.  But the reality is, we are also a commercial organisation with shareholders, and need to create value.  Unlike many of the large corporations we don’t believe this will come through financial engineering – we believe the only way to create value is by putting the service user at the heart of everything we do and through continuous innovation that will provide the positive outcomes for all our stakeholders.

I felt absolutely sick watching this footage and was left having nightmares remembering what happened to my sister before she came to HFHC at her previous placement, when she was dragged by a support worker down the corridor by her hair. What was shown last night was care from a bygone age where, despite plenty of money available (over £3500 a week/placement) and modern premises, systematic failure still occurred. This illustrates that you certainly can’t judge a leopard by its spots.

Structured home activities seemed to be in-existent, boredom rife, abuse and torture plentiful, and management controls lacking robustness and solely in place to pay lip service.  This raises wider questions about the company’s recruitment, training and quality assurance procedures. These staff should not have slipped through the recruitment process, and if they had, then they certainly should have been picked out during their training if they weren’t displaying the right values and ethos. Failing these milestones at the very least, the quality assurance aspect of the organisation should have been on top of this, especially in light of the conviction of a support worker for violent conduct towards a service user from the same home a couple months prior to the Panorama investigation. What was demonstrated was a culture certainly not fit for purpose.

All the stakeholders involved at Winterbourne View from the owners, senior managers and the regulatory bodies should be ashamed of what has happened and should take a very close look at whether they should be working in this sector. This is a sector that requires of its individuals the utmost integrity, due to the trust placed upon them by families and the wider society. Unfortunately, in this case, it appears that these stakeholders failed to meet the most fundamental needs of these vulnerable adults, notably to feel safe and secure.

For those who missed this: http://www.bbc.co.uk/programmes/b011pwt6#synopsis

Why then, you might ask, is this company hitting the news for all the wrong reasons? Many pundits will say that this is because Southern Cross’s rents are too high or that government cuts are having a serious impact, and yes these all maybe true, but in my opinion the fundamental answer is a more general one that can be indirectly attributed to events that occurred over 30 years ago. Rewind to the 1980s, the government at the time went for a plurastic approach making it possible for people on income support to access private homes starting with the Supplementary Benefit Regulations. This coincided with changing user’s aspirations demanding better environments than the ones typically offered by local authorities that were constructed predominantly from the post-war era. The net result of this was that care homes became market commodities that attracted large amounts of investment from the private sector, piling into supply an insatiable demand for services. Amongst the players bringing in investment were private equity firms and investment funds who typically had a 3-5 year exposure to this new market, where they would initially invest by buying and existing care operator, grow the care business mainly through acquiring other providers and then sell the portfolio of homes, with their income generating residents, for a profit thanks to economies of scales and rationalisation to another firm with the same sort of timeline – this process happened many times over. The model is no different for these funds that enter other sectors, all with varying degrees of success. Is this perhaps where the problem lies; should the health and social care sector which has no financial protection or regulatory control, be treated in an identical way to other sectors in light of what it provides?

With cheap money plentiful from the banks and the closure of local authority services fuelling the growth of the marketplace, it all looked rosy, but then the bubble burst…with the credit crunch. With the crunch came expensive and scarce bank finance, government cuts for fees and rising costs all resulting in a sector that was losing its shine. The Southern Cross story is one that may tarnish private equity’s reputation operating within the sector and could have far reaching consequences to the way the market operates and is regulated if market failure is deemed to have occurred in the near future.

From 2004-2007, Blackstone the largest global private equity firm engineered 3 big deals evidencing its general sophistication at making money. It initially bought 2 care providers; Southern Cross for £162m and  Ashbourne Grp for £85m. The 3^rd deal was NHP, bought for £560m, a property company providing the premises where the likes of Southern Cross operated from. In crude terms, half of the leases of the newly enlarged Southern Cross were owned by NHP. Whilst in Blackstone’s ownership, these leases were renegotiated at more favourable rates in NHP’s favour, usually on 25 year terms with a yearly built-in upward escalator of at least 2.5% but in some cases the more onerous RPI was used. In 2007 Blackstone sold NHP for £1billion and floated the enlarged Southern Cross Healthcare Holdings. The FT estimated that Blackstone quadrupled its original investment, netting it at least £1billon profit from both selling NHP and the floatation. Not bad for 3 years worth of deal making, but the accolades of succesful genius business wheeling and dealing are starting to change, when the genetically modified organisation is fighting for survival – that has potential social and political implications which could adversely affect not just its stakeholders but also a much wider audience.

It’s been an astonishing process, as it has brought to the forefront to all of us how much HFHC has evolved over the last 6 years, becoming a specialist provider based in Lincolnshire that now supports individuals from over 21 local authorities nationwide – and as a family we are immensely proud to be associated with it.  We recognise that in the face of the severe cuts that the Health and Social Care sector is being subjected to, we must embrace this changing paradigm. This change through shrinking budgets doesn’t have to be to the detriment of the people that we support. We really believe that we can continue to create better outcomes through our creative and innovative approach which should safeguard the continuation of providing higher levels of service and excellence for the individuals who use our service.

Check out the brochure here!

Part of me this time round is still apprehensive, as there is less ignorance and more reality with regards to what is involved in the first 10-12 months of nurturing a baby, coupled with the fact that we already have one which we didn’t have before. A good friend put it eloquently when he told me that you’d expect it to be twice as hard with 2 children, in his opinion this is absolute rubbish and you shouldn’t expect anything less than 10 times harder. With this in mind and the fact that we only have 10ish weeks till due date, Kirsten and I, with occasionally Poppy are making sure that we are making the most of our weekends and odd evenings to pack in as much as possible. Fortunately Laura my sister is absolutely delighted this time and on the face of it is extremely excited second time round, which is great as she has already proved to be a great aunty to Poppy.

The structured environment that these specialist schools and colleges have provided over the last 15 years to their pupils, has also for parents brought about structure and a temporary sense of normality and security to the tough grind of raising a child with a learning disability. In most cases, parents have a niggling uncomfortable feeling, growing like a nasty tumour as the years go by, about what happens when school ends and the safety net has disappeared (see post March 20th, 2010). This year I will meet hundreds of parents in similar predicaments and generally the same chain of events happens.

Mothers hover around our stand, reading the brief literature on the boards, whilst plucking up the courage to find out a bit more…it’s etched on their faces that this experience of having to go through this decision process on their child’s future, is uncomfortable and possibly the most harrowing to date.

Once initial niceties have been exchanged and further background is required, I take a deep breath and pointing at a picture on the stand I start my repertoire, which is something along these lines:

“You see that girl on the top left hand side with the beanie and the green scarf – that’s my sister Laura and about 15 years ago my parents were in the same position that you are probably in now, worrying about what was to happen after she left school”

As a team, we have made the conscious decision that we must provide a bit of hope to everyone we talk to, even if their children are not suitable for HFHC. Through the knowledge we’ve gained, we try and direct parents towards possible solutions or better matched providers.

I then go through the different options (see post March 20^th2010) and why Laura particularly needed residential care, and that everything that was offered by our local authority was totally substandard. Residents in the majority of cases were being warehoused, with TV typically taking a leading role all too often – even though the brochures said otherwise. This was our motivation in creating a home from home that enabled people to lead fulfilled lives, through well thought out activities not forgetting the decent environments and well trained staff.

At this point, the reactions of parents can be categorised into two. The first tend to be very dismissive and say they want their child to stay at home, where they will care for them  and don’t want to think about the long term future.

The other category of parents are still fearful of the future but are more open minded and want to explorer all the possibilities that exist. The question that is always asked is about funding. In short funding exists if the placement is deemed suitable and the correct process is applied. Due to our very specialist services, we have people from all over the UK and we’ve just recently hit our 20^th new local authority to have placed with us. We tend to find that people funded are due to parents really driving the process, who are prepared for a real fight and are ready to scream loud and kick hard, to get what is required and needed. Some parents are just too tired and fragile to take on this next fight whilst other perk up and reply that they’ve had to fight for everything to date and want to know what the next step is.

As I say to everyone, my mother is a wealth of knowledge and talks to lots of parents within this predicament and is always contactable on the number on the flier.

Home From Home Care has several specialist care homes in the villages cut off, which are supporting 24/7 some of the most vulnerable individuals in our society. Many have autism, high levels of epilepsy and other complex health needs, and the thought that our staff teams who are trained to support these people not being able to get into work didn’t bare thinking about.

What happened in the face of this potential crisis is one that my family is incredibly proud of and as the saying goes man never made any material as resilient as the human spirit and that is precisely what was witnessed over the proceeding days.

The stories of staff pulling together and organising appropriate cover in these difficult circumstances, many doing longer shifts, others braving the journey or walking for miles and even bringing in sleeping bags and change of clothes so as to ensure that they were on site for their next shift in the event that they got snowed in – are but some of the acts which we are all most grateful and proud of.

And what about the residents? I think the consensus is, that it’s been exciting and although they have not been able to access the things they usually do out in the community, it’s been a great chance to get into the Christmas spirit by making decorations, mince pies and snow men – as someone appropriately put it, it’s like Christmas has arrived!

We had an amazingly fun time together, the highlight was Bath Thermae Spa where we soaked up the atmosphere and relaxed for a couple of well deserved hours.  Although there has been much controversy regarding the Spa’s build, delivery and cost, that aside it makes the perfect afternoon treat. The piece de resistance is the outside naturally heated pool located on the roof overlooking the beautiful Bath landscape. The other attraction are the 4 steam rooms which kick out different aromas that can make even the most stressed person melt into a slumber. They also have foot spas which are essentially sinks sunk into the floor with hot water running water into them – being brutally honest, I have to say that I can’t quite see their purpose, as having a bath at home is probably a better experience, but this was Laura’s favourite– as they say, it’s the simple things in life!

Telecare it has to be said, can provide some magical life changing solutions to debilitating problems that in the past would have been extremely difficult to overcome and costly to manage. Due to these advantages, Telecare has become prevalent in many aspects of healthcare. Within the eldercare sector, it is used to allow the elderly who start to display vulnerabilities to stay longer in their own homes. Within Learning Disabilities it is widely used within Supported Living and in an organisation like HFHC that delivers specialist care, it also has its place especially in our mews properties setup for those who wish to sample greater independence within a structured environment.

With serious spending cuts taking place and more on the horizon, Telecare is seen as a major solution due to the associated cost benefits – but just like the arguments for CCTV as a substitute for fewer policemen on the streets, the camera may record the criminal act being committed, but there are no assurances that it brings the criminal act to an end.

Unfortunately the same must apply to Telecare, so that the vulnerable aren’t put at risk due to an overreliance on these monitoring solutions. It must be used to support the delivery of care, but in no way must it be seen as a viable substitute to people performing the care function.

Moving house, always a stressful time was compounded by an incompetent removal firm announcing 2 days before the big one that they had double booked… Just when the fatigue was fully setting in, Poppy caught Chickenpox, a virus that both Kirsten and I had caught when we were younger, but had since then conveniently blocked out the nastiness of it – an eye opener!

Now that it’s the Autumn Term, I look forward to blogging about the different issues of LD, as well as on the more banal bits of life.

Here are a few brief pointers to consider…

-Look at as many places as possible for your child

-Start the process early, it can take as long as a year to secure a placement

-Don’t be put off by Local Authorities saying they won’t fund out of county placements

-Describe your child on their most challenging day.  Even though this may not be the case 100% of the time, the assessment must be based on real needs

-Ask questions from the care providers, for example, what training or development is available for your child, what typical day will your child have, how can they make their space into a real home.

The eating area is set over 2 floors overlooking the external pool, which has enough swimmers to make good people watching. The modern décor is interesting, with a contemporary Mediterranean feel to it and the menu reflects this.  On the ground floor the bar serves tea, coffee and cake as well as incredibly good value tasty Tapas which we all tucked into (£10 for 3 dishes). The first floor houses the restaurant which again incorporates the pool thanks to the glazed areas, the food served here is more expensive and I would recommend staying downstairs.

The Lido also offers spa treatments and makes a great treat for those in need of some relaxation. www.lidobristol.com.

In response I’d like to say that I told him where to go, instead I told him not to worry as he wasn’t to know. Should I have made an excuse? In most circumstances I’d still respond in the same way, especially as I’m not always the most PC amongst friends and believe that you don’t dish it out if you can’t take it – but to strangers I’m on best behaviour. Naturally you would expect most people to take this approach, especially a doctor who should have known better when talking about such a sensitive subject.

Anyway, it is not my aim to tarnish the whole medical profession with the same brush as the majority are decent individuals. However, there are still cases of people with LD being diagnosed and  treated without sensitivity or dignity, which is problematic right across the country. So when the Royal College of Nursing creates some new guidance in this area, it’s refreshing – hopefully leading to a greater awareness.

I have to say these events are draining as many parents have a ticking time bomb on their hands. In the majority of cases, the children at these events will leave college this summer term and nothing has been put into place for this next step. This could be due to several reasons, lack of continuity between different social workers, children being lost in the bureaucratic system or simply exhausted parents who are in a semi state of denial about the current situation. Ideally the best time to be dealing with this is from the age of 14-16, so as to give plenty of time to assess the different options available, enabling the final decision to be fully informed.

You might be thinking, what are the options? There are literally hundreds of local authority websites that deal with this issue from a common governmental perspective, so there is no point in me repeating what they say, but as a parent if you are going through this daunting and complex process there is very little other information with warts and all out there.

So, I’ll try and compile a very simple guide built upon the things that I’ve learnt through parents and professionals that might help. This however must be used in the following context that not one size fits all…these are all individuals, that have varying levels of needs. This means that what might work for one individual, might not necessarily work for another. Sometimes, it’s not always obvious what all these needs are, for example parents have a certain assumption of what their child can/can’t do, but often the reality can be very different outside the parental sphere etc.

1. Stay within the parental home with some outside support provided.

This is very personal, quite a few of the parents I have met like this option for the obvious reasons that their children are at home – others couldn’t think of anything worse and want their children/now young adults to lead as an independent life as possible, away from them and in most instances their children feel the same way, I know I did when I left home!

With a personal budget provided by the Local Authority, external care can be purchased from a number of agencies/providers or can be organised direct – this budget is determined by an assessment of their required needs which I’ll touch upon later.

The arguments against this approach:

- The child becomes dependant on ageing parents

- Dependency on the agency to maintain quality and to be still around in the future

- If agency is not the preferred choice then the onus is on the parents to employ staff directly with implications of recruitment, training, HR and payroll all not to be sniffed at, especially if the individual requires a lot of support.

2. Supported living

This is essentially when the young adult becomes a tenant of a flat or house, probably through a housing association, with the support/care is provided by external providers on an adhoc basis. Local authority social services tend to prefer this option as part of the funding required is provided from an external budget – housing benefit. This works well for a lot of people who don’t have high support needs and can be used in conjunction with a personal budget.

The arguments against this approach:

- Cases of loneliness and bullying

- Dependency on the housing association to be a good landlord

- Dependency on the agency/provider to maintain quality and to be still around in the future

- Lack of management in terms of staffing, care plans, continuity and crisis management.

3. Residential care

This is when people live within a care home and are supported 24/7. This is more suited to those who have high support needs; vulnerability; medical conditions. Local authorities’ least favourite due to it’s cost. Funding is  postcode lottery meaning that policy dictates that you have to look within your local authority’s area, if the facilities within the area can’t meet the individual’s need, but the needs can be met out of county, then a battle inevitably has to take place to get funding.

The arguments against this approach:

- Potential for institutionalisation

- Dependency on the care provider to maintain quality and to still be around in the future

The needs lead assessment

When this assessment is undertaken by the local authority, many parents seem to be embarrassed about some their children’s needs and will dumb them down – I guess this is pretty natural as everyone wants to talk their children up – me included! However in this instance it’s fundamentally important to state the true needs, so that they can be appropriately identified and funded accordingly. All too often many placements breakdown, causing irreversible damage, due to needs that were more profound than originally anticipated in the assessment.

Well, I thought this was the case, but until recently, much to my amazement these things are still possible, albeit with some restraint and unbelievably they’re just as enjoyable, if not more than before… probably because there’s a balance to my past hedonistic life and there is no denying there have been some difficult and challenging moments due to sleep deprivation and general weariness that may have contributed to this.

I have seen Avatar in 3D and thought it was amazing (in the past the hard to please me would have probably said, that at best –  it was mediocre). I’ve been skiing on a stag do, admittedly in Scotland, but there was snow and the skiing actually exceeded my expectations. I have had several passes from the trouser lady, for the odd Friday and Saturday evenings which have been super enjoyable and mountain biking is back on the cards in the spring, although my general fitness must improve.

More significantly life is more complete than before, but with this comes the caveat of having a greater awareness on grown up issues, that before when single and care free, were a no go area. I find myself paying more attention to matters concerning health and education, micro-questioning the most random things, such as why does Petit Filous have 1.5 tea spoons of sugar in it and yet it’s marketed for babies?!!? And why are baby walkers sold (must confess didn’t know what they were until we bought one), when studies have shown that they can be potentially physically and mentally detrimental to the baby and they’re banned in Canada?!!?

To the layman like me looking life through this new altered sense of awareness, the world seems to be a crazy jungle and yet there are many positives to this new consciousness. I’d never have thought going around an aquarium or city farm could be so fun, seen through a baby’s eyes, the magic of a pig squealing or a fish floating in mid air…all so mad and we still haven’t done the zoo yet!

[Show as slideshow]

The homes shown were owned by both big groups as well as the smaller operators. When some of the senior management/owners were interviewed, you had the distasteful feeling that in the majority of cases, the residents were seen as a pure commodity and the profits made were being derived as a consequence of the misfortune of others, suggesting that some areas of the sector are operating in an immoral manner, on par to that of trading illicit drugs or arms – strong but possibly true.

You can probably tell, this subject makes me feel angry as I know this is also happens in the LD sector. As a family it weighed heavily on our minds whether we should be a ‘not for profit’ organisation. In the end we chose not to, not because we want to get rich quick, but because we wanted a well resourced organisation. Why? So that it can provide decent living environments, afford good management as well as the costly staff training programs so as not only to comply with regulations and legislation but to exceed them – our organisation’s purpose can’t be to just meet the basic needs of our residents, but to support them so that they reach their full potential in living a fulfilled life.

For the last 10 years, my sister Laura has chosen to spend her Christmas at wherever she lives. This could be that she thinks that Christmas with her family is rubbish, but I’d prefer to think it is because that she has so much fun with her peers and the staff who support her, that nothing comes close. Since Christmas is not the same without her, it has meant that my folks and I have been flexible about what we do.

So, when my Uncle generously invited us to come and stay at his gastro pub, the Carey Arms at Babbacombe in Devon for a family Christmas – it was met with a resounding, yes. If you’re looking for a treat by the sea, then rest assured you won’t be disappointed, the food here is excellent with the boutique accommodation and sea views to match.

The appearance of this sort of establishment specialising more on food and less on ‘wet sales’ is obviously a result from this country’s excessive alcohol duty and the smoking ban and another place that we sampled that has embraced this new paradigm, is the Cowshed in Bristol. This gastronomic pub/wine bar has only recently opened. Here they do a reasonable 2 course lunch menu for £10 – good value and tasty, but their piece de resistance is the alien like crab that is the star of the Discovery Channel’s, Deadliest Catch. This Alaskan King Crab delicacy consists of just the crab’s legs and tastes much like lobster and served with a Thermidor sauce, is delicious. We tried a small sized leg which still measured a jaw dropping 30cm long – I’m told that the bigger ones are a mind boggling meter in length.

As a family they have first hand experience of  the difficulties of finding suitable holiday destinations, so their centre is a new concept offering stress free holidays designed specifically for families affected by Learning Disabilities. Indeed whether you have a link with learning disabilities or not, the self catering accommodation, consisting of six units of various sizes, housed within converted barns, are of an incredibly high standard and could give any place a run for its money in terms of quality. The on-site facilities, both indoors and out, are extensive with no chance of anyone being bored – my favourite being the very warm indoor swimming pool.

The centre is located between the picturesque Lincolnshire Wolds and the East coast, with seal infested sandy beaches, pretty market towns and country parks all within easy reach.

Seeing all this from my sister’s perspective, she must be thinking:

“What the hell is he doing, giving that screaming baby attention – all it does is poo and cry, adding nothing to the conversation apart from interruptions – what’s happened to him? This isn’t the impatient brother I know!”

Now everything becomes clearer. The slight tinge of hurt that was felt when she asked to go home prematurely the night before, because she was finding it all too difficult to deal with her feelings, disappears. This is reinforced when I receive a very unexpected remorseful email the next day apologising for her actions – What’s happened here? This is not the sister I know either!

I can only conclude that my sister is a liberated genius – she’s not been hampered by social conditioning into suppressing emotions that she finds too difficult to deal with. Her open and honest approach to these feelings is refreshing and I can only admire her adult manner in dealing with this tricky situation.

Hopefully with time, things will become easier as Poppy rises to the challenge of rehabilitation by having her temporary ASBO lifted.

Whatever your views on US politics, whether Republican or Democrat – The Sunday Times, one of my favourite publications is serialising Sarah Palin’s book, An American Life. Interestingly this week’s serialisation focuses on the pregnancy of her 4th child.

As a woman of 43, the risks of having a baby with Down’s syndrome were obviously elevated and she was initially told it was a 1 in 80 chance. After her 12 week scan this became reduced to 1 in 12 and following an amniocentesis, it was confirmed that her baby had Downs – despite this news she went on to have Trigg.

How any of us if faced with this news and those same life changing choices would react, is a difficult one to consider but on the non political front Palin has certainly earned my admiration.

It’s fair to say that my sister doesn’t like to be the centre of attention especially if there is a lead up over time, although secretly on a spontaneous out of the blue moment she craves it and rises to the occasion. From the accounts that I’ve heard, she performed to the latter, taking the microphone and doing an unprepared speech, firstly thanking everyone for coming and then telling them that she was now an aunty – I’d love to have seen it and am sorry I couldn’t be there. My thanks goes out to everyone who played a part in organising it.

To view the full HFHC! Winter 2009

Fortunately we only live a 5 minute drive away from the A&E and up to that point I had not been entirely convinced with the gravity of the situation, but equally was not about to start arguing with maternal instinct. The severity only dawned on me in the car, when I glanced over at Poppy who was in Kirsten’s arms and noticed that she had gone a grey colour and appeared to be going in and out of consciousness.

The Hospital

The next couple of hours were a surreal ER nightmare. Kirsten ran out of the car straight into A&E screaming at the woman behind the desk that her baby had breathing difficulties and was  immediately rushed into “Resusc” After what seemed an eternity with doctors and nurses intervening, Poppy’s situation stabilised and her pulse and breathing started to get stronger. At last there was a small moment to reflect on what had just happened, when the nightmare took a turn for the worse. The doctor in charge informed us that he wanted to perform a lumber puncture to test for suspected Meningitis and needed us to sign the relevant paper work.

Meningitis

My understanding of Meningitis was superficial; I knew about ‘the tumbler test’ photophobia and flu like symptoms and if not quickly diagnosed/treated it could lead to fatality. Upon further research on Wikipedia from my mobile phone I vaguely got a better understanding, that there are several strains, some of which are viral and some bacterial, but the common denominator being that the fluid around/in the brain/spinal chord is infected.

What I was unaware of, was that if you make a recovery it might not necessarily be a full one and you could be left with deafness, epilepsy or brain damage etc. I then made the realisation that I had come across this, through work at Home From Home Care – I felt sick and decided not to share this additional bit of information with Kirsten.

The Results

It takes at least 24-48hrs from the lumber puncture being taken to get an idea of whether it’s Meningitis. During this waiting period, I learnt from my mother that she had gone through exactly the same process when Laura was a baby, and yet again, I appreciated how much my folks had gone through with her.

After 3 nights in hospital Poppy was given the all clear – she hadn’t contracted Meningitis, but was suffering from a viral infection that had affected her more than it should have done. What this episode has achieved is to make us more aware of Meningitis, how evil and frightening it is; and how quickly and indiscriminately it attacks its victims.

The message from www.meningitisuk.org is: “The most important thing to remember is to FOLLOW YOUR INSTINCTS AND ACT FAST. If you think something is wrong, GO IMMEDIATELY TO YOUR NEAREST GP OR CASUALTY UNIT”.