Please SUPPORT, SIGN & SHARE our Petition below.
On Friday 16th June, Many families across Hertfordshire received the devastating news that due to NHS budget Cuts funding for Nascot Lawn Children’s Respite Service will be no more. Nascot Lawn will therefore close on 31st October 2017.
Nascot Lawn Respite Services provide regular overnight respite and care for children and young adults with severe learning and physical disabilities with additional complex medical needs. A day care service for children under 5 is also provided.
Nascot Lawn allows parent and carers to take a much-needed break, Confident in the knowledge that their child is receiving the highest standard of care by familiar staff. The staff are made up of an experienced team of qualified Learning Disability and Sick Children Nurses and trained Health Care Support Workers. The staff strive to meet all children’s and young adults emotional and physical care needs along provided them with activities that they enjoy. Many of the Parents and Carers see the staff as an extension of their families. Nascot Lawn is described as ‘Home from Home’. It deeply saddens us that the well-loved Staff face losing their jobs also.
Our family first came across Nascot Lawns in 2014 through our Occupational Therapist (OT). Our OT explained briefly want it was all about and then asked me if I wanted her to make a referral for day care sessions, I said yes, but felt uncertain about my decision. I felt I was failing as my job as a mother and admitting defeat. When the day came to have a first visit I was so nervous. I have never been in a place like this before, what will it be like? Will it be filled with sadness and pity for all the children who attend. Will it be all clinical and cold? As I approach the huge house and was greeted by a very friendly lady who I now know as the lovely Elaine all my worries slowly slipped away. The house was beautiful and felt very grand but homely. Apart from the special needs equipment scattered about (which we had mainly the same equipment in our living room) you really could be mistaken for just stepping into your Aunt’s house. The fab staff who work there could in fact be mistaken for your Aunties. The deep genuine care each member of staff shows each child is beyond touching and so comforting. They see each child for exactly who they are and tailor their approach to that childs needs and personality.
Looking back to October 2014 Non Stop-tober Part 2 – October 2014 I remember the feelings of guilt which did thankfully fade away the more Owen went. Eventually Florence got used to saying goodbye to her twin, not without the help at times from some chocolate bribery from the Staff. Florence and I then used to spent quality time together doing things Owen couldn’t cope with i.e softplay or simply spending quality time in a park with the full attention of her mum like all 2 year olds should be able to do. Without the staff being so amazing I doubt this would have ever of happened. I probably would have driven myself mad with exhaustion & guilt. I know for definite that both Owen and I would not of being ready for separation when he started school without his time at Nascot Lawn.
My sister decided she wanted to celebrate her 29th birthday with a before turning 30 bucket list idea of a skydive. Owens auntie wanted to do it for a charity that would benefit Owen and asked where could she raise money for. Nascot Lawn immediately popped into my mind. We were so thankful for everything that Nascot Lawn had done for us as a family it just seemed the perfect idea.
Owen left the day care sessions when he started school last year. We applied for Overnight respite sessions and recently after having this approved have been doing some tea visits to make sure Owen is familiar and confident about staying over night. This has been a very slow progress as Owen is very overwhelmed by any change, but Nascot Lawn allowed us to go at his pace. Next month in July Owen is going to have his first sleepover at respite. We as a whole family have geared ourselves up for this huge event, in what this will actually mean for our family. Without Nascot Lawn, days out as are family are well scrutinised and planned. The girls constantly miss out and that good old guilt creeps back in. Owen is a bad sleeper so having a decent amount of sleep still feels like a distant dream. Looking after Owen can be complicated, mainly due to him being tube fed through a Mic-key button. Just yesterday he managed to pull the whole thing out, obviously I acted quickly and popped one back in.
Sometimes jealously of other couples who have nights out creeps in. Sometimes I wish we could just go to the cinema. Sometimes I wish we could be more than carer to a complex child who we have to worry about 24 hours a day 7 days a week. I forgotten how it feels to have care free moments, to fully relax, not listening to beeps, not listening to coughs at 4am and then racing down stairs because the cough turned into Owen choking on his secretions. Constantly calling his name as he goes into a ‘daydream’ to make sure it isn’t an absent seizure, after he may have had one at school recently. Checking and re checking we have all his emergency gear every time we pop out the house. Planning our day whole day around his tube feeds, Wondering if a place is wheelchair accessible, wondering what facilities they have there. Will he cope in this environment. But we have no choice. Will literally have no one who is willing to step up to the plate and help us out. We feel completely isolated and alone. The sad thing was change was coming. It was like a glimmer of hope. A chance to take a breath. The girls were excited and were planning places we could now visit. Alex and I even talked about going OUT, OUT! (Mickey Flanagan ref) But now that small glimmer was gone. All we can see is darkness.
Don’t get me wrong I am in no way complaining about all I have to do, I love being Owens mother, it is an honour. This is not just about being able to have a night out. We are just fully aware as Owen gets older and his level of need increases so caring for him is going to get harder. All I want is to be allowed to recharge my batteries once in a while and then continue being the best mum I can to all four of my children. I really want all of Owens sisters not to feel they have missed out. I want them to live full fulfilled lives.
Please also join the Save Nascot Lawn Children’s Respite Services Facebook page. The link is below. This has so many heartfelt stories from those who attend Nascot Lawn.
Looking after a loved one can be enormously rewarding, But it can also be both utterly physically and mentally exhausting. Without vital breaks provided by Nascot Lawn Respite Services, Carers can often reach breaking point where they can no longer continue and their own physical and mental health deteriorates as a result.
On the NHS Nascot Lawn website itself they quote
“ This care enables families to continue to look after children with very complex needs in their own home”
What is more vital than that?
Trust us we understand how strained the NHS is at the moment. We have first hand experience of this. BUT how can it be right to cut vital services from the most vulnerable of society.
Please can you all share and sign the petition at the top of this post.
Look out for further updates concerning this campaign.
Below is some links to the media coverage we have so far