What does Nascot Lawn mean to me?

Lennon was an NHS Nascot Lawn user for 4 years.

He was first referred to NHS Nascot Lawn when he was 2 years old. At that time he had a Hickman line for TPN and fluids, 24 hour oxygen and a Peg-J tube for a 24 hour feed. After a few months of ‘tea visits’ the staff, Ian and I, all made the decision that respite at NHS Nascot Lawn would not work due to Lennon’s complex medical need – he was too medical complex even for NHS Nascot Lawn.

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Lennon slept a lot in the early days.

5 years ago, our family was in crisis. We could not cope with the gruelling medical routine Lennon needed in order to stay alive. We had Isla and I was pregnant with Florence. We were providing hourly medical care throughout the day and 2 hourly medical care throughout the night, with no break. We had a continuing care package but Isla was unable to sleep with a night nurse in the house, and after a year of trying this we had to stop – we were not up providing medical care for Lennon on those nights, but we were up most of the night with a frightened toddler awake and crying.

Lennon was deemed by Great Ormond Street Hospital (GOS) as one of the most medically complex children in the country. He was under 16 of the hospitals specialist teams. He was a frequent flyer to 4 of the wards at GOS. During a recent stay on one of those wards I was asked not to leave the ward as the nursing team were unable to provide Lennon with his complex medical care alongside his behavioural need. You see, Lennon was not only very medically fragile; he was severally autistic and had profound and multiple learning disabilities (PMLD). He was deaf blind, had very little communication (unless you knew him well) and absolutely no sense of danger. He was disabled, but very able bodied at the same time. His Occupational Therapist has never come across a child like him.

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Isla and Florence visiting their brother in Great Ormond St – They hadn’t seen him all week.
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Naughty Lennon!

Once we had been referred back to NHS Nascot Lawn, and had a care package agreed by a panel we began the process of ‘tea visits’ and compiling care plans. This took 9 months. 9 months of qualified nurses training and becoming competent in being able to carry out my sons medical needs. 9 months of writing and re writing care plans. 9 months of preparation before Lennon was able to stay just one night at NHS Nascot Lawn.

We are a family from East and North Hertfordshire. NHS Nascot Lawn is the furthest respite provision in the county from our home and Lennon’s severe learning disability (SLD) school. 2 of the 3 county council commissioned respite facilities are fairly close to our home, and even closer to Lennon’s school, but neither were in any position to be able to accept Lennon and the high level of nursing input needed to keep him alive every day. He needed nursing care to be able to attend school, he needed nursing care to be able to live with his family at home, and therefor to be able to access respite care he also needed nursing care – Hence our need for NHS Nascot Lawn.

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Lennon’s last visit to Nascot Lawn. He spent the weekend before he died there.

NHS Nascot Lawn was a lifeline for my family – and I do not use that word lightly.

Lifeline.

Providing medical care to your own child for 24 hours a day, 7 days a week is gruelling – Both emotionally and physically. Getting up every 2 hours throughout the night, every single night is exhausting. You cannot roll over in bed and make a decision to ‘skip’ getting up tonight because you simply don’t have the energy. You have to drag yourself out of bed, force your legs to carry you to your son’s downstairs bedroom and wake up enough to be competent in carrying out the procedures he needs in order to make it through to the next morning. Life or death is a huge responsibility for any parent to have to deal with. No one would expect a nurse in a hospital to work the hour’s parents do, or take on the responsibility that parents take on when they are caring for medically complex child. And I haven’t even covered the effect that all of this had on my other children. They also needed their Mum and Dad’s time and affection. My 9 and 4 year girls often got up in the mornings, made their own breakfasts and packed lunches and got themselves washed and dressed.

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Lennon’s daily bedtime medically routine.

Not only did NHS Nascot Lawn give Lennon an opportunity to have sleepovers and to spend time with children like him out of school, it also provided respite to our whole family. Time for Ian and I to catch up on well needed sleep, housework, and paperwork. It enabled us to spend quality time with each other, and with Isla and Florence. We lived like a ‘normal’ family for one weekend a month (my 9 years old phrase). We could go on holiday (holidays with Lennon were near on impossible, and travelling abroad was a no go as my sons medical team at GOS had advised us not to leave the country without a medical practitioner) and have fun days out at theme parks and the seaside. We could go out for meals, pop to the shops and stay overnight with friends and family. Things that other families take for granted every day.

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Summer 2016. Isla and florence enjoying a summer holiday in Devon whilst Lennon stayed at Nascot Lawn.

After receiving the letter back in June informing us of the impending closure of NHS Nascot Lawn due to Herts Valley CCG’s (HVCCG) decision to withdraw funding, we were visited by the East and North Herts (ENH) Commissioner responsible for my sons care package. She had been researching respite options for Lennon. Only one option seemed viable at that time – Helen and Douglas House, Oxford. A 4 hour round trip from our home and Lennon’s SLD School. The ENH commissioner (and various other medical practitioners) had informed us that respite at the County Council commissioned facilities would not be an option, due to them having no qualified nursing input – despite HVCCG stating that all children with complex medical needs could be safely cared for in these units. To our family, Lennon’s medical team at GOS and Lennon’s health, this was not a safe option. Potential transfer to a hospital who did not know him and his individual medical complexities, a 2 hour journey for us to get to him if he became unstable and needed to be transferred to a hospital and a 2 hour journey for a child who requires hourly medical input takes an awful lot of forward planning. This then left us with no option for respite other than NHS Nascot Lawn. We were then faced with the impeding reality of being solely responsible for a child requiring an extreme level of medical input, with no overnight respite for the indefinite future. No break, no sleep, no time for our other children. To us, it seemed that the most vulnerable children and families in the county were being set adrift.

We were later advised to consider looking into a 38 week a year residential placement for Lennon – potentially costing the NHS in excess of £200,000 per year. All because we could not access 3 nights respite every month. This seemed extreme, not least because we wanted Lennon to live at home, with his family like every other 10 year old, but because it made no sense financially.

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Family lift selfie! Summer 2015.

Lennon then died suddenly.

We knew him living into adulthood was unlikely and that every day he was alive was a miracle. We knew we could not keep him alive forever, no matter how hard we tried. The life of a medically complex child is fragile. They balance on a line between life and death.

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Massive smiles!

Lennon is one of two NHS Nascot Lawn children that have died.

Lennon was not the only medically complex child living in Hertfordshire, he was not the first, and he will not be the last. There are, and will be in the future, more medically complex children surviving – Children whose families will need the help of a nursing care respite unit in order to carry on caring for their children at home.

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October 2016, A hospital stay. I was still Lennon’s primary carer when he was in hospital. I administered all his medications, and monitored all his symptoms.

Advancements in medicine mean children who would not of survived 10 or 20 years ago, are now surviving – But at a cost. These children will need medical input; and some will need the same amount of high dependency care that Lennon required in order to stay alive. What will happen when these families need respite? Where will they go? Or will they also be encouraged to look into residential care for their children?

When the NHS was launched in 1948, its values were based on 3 core principles –

That it meets the needs of everyone,

That it be free at the point of delivery

That it be based on clinical need, not ability to pay.

To my knowledge, these 3 values still apply today.

And the NHS still aspires to put patients at the heart of everything it does.

 

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Lennon and Mummy x

Previous blog post – One More Minute.

29 thoughts on “What does Nascot Lawn mean to me?

  1. Such an emotional rollercoaster thank goodness for wonderful parents carers like you I can’t imagine how hard this journey was for you all but know that the respite is so so important we are only at the beginning of our journey we are hoping that the respite we may use will help us to give our Dougie a comfortable safe environment with specialist therapy rooms to allow him & us to relax spend quality time together & make memories to treasure always my heart & love goes out to you all & how lucky your son was to have an amazing family & how you were to have such an amazing boy big love x

    Liked by 1 person

  2. #thesatsesh this is fascinating, I hadnt heard of this service but as you correctly said, it makes much more sense for small amounts of respite and the family home than intense care packages? I think perhaps the NHS need reminding of the core values from 1948. I learnt a lot from this, thanks for sharing.

    Liked by 1 person

    1. Thank you. Respite is a much needed service for families providing 24 care, it keeps families together, recharges parents batteries and gives siblings some much needed quality time with their parents ❤️

      Liked by 1 person

  3. Such an emotionally charged post. The NHS is incredible. We are truly so lucky to have it. Your post is such a powerful one. Thank you so much for sharing it.

    May Lennon rest in peace bless him. I haven’t alway followed your journey but I remember you reporting his passing and he sounds like he was an amazing little dude.

    You genuinely are the most incredible parents. Parenthood certainly forces you to find strength you never knew you had and you two have taken it to levels most of us could never imagine.

    Huge respect to you both.
    Thank you for linking up to #KCACOLS

    Liked by 1 person

  4. Such a heart-wrenching story, of both hope and despair. I’m so glad you got the help you needed eventually, and hope that more of these wonderful services can be preserved for families in the future. Thank you for speaking out and sharing your story. #Blogstravaganza

    Liked by 1 person

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