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