Author: Nikki

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.

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.

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.

Previous blog post – One More Minute.

Since you died I’ve looked for you – looked for signs that your near by.

Are you watching us?

Do remember all the happy times we had together?

In the days after you died the smoke alarms in our house kept alarming at appropriate moments. Ironic really, I hate the smoke alarm – it’s so loud and controlling.

You could always hear it and you would burst into giggles whenever you heard it.

We would arrive home from Keech to the ear piercing ringing of the alarm. I’m sure the whole village can hear it.

In the silence of the night they would cause a disturbance – you never did like the quiet.

The most profound time was when the shrieking began just seconds after returning home from your funeral. Isla was crying – she wanted you back. Cue the smoke alarm. I said it was you, communicating to her that you haven’t left us. You’ll always be with us, in our hearts.

I look for white feathers and butterflies.

We have a white butterfly lingering outside the front of our house. It flies around the window, watching us, trying to get inside. I sit patiently watching it negotiate its way around the shrubbery.

When we were in Majorca, my mum found it fluttering behind the front window curtain.

I talk to you – not out loud, in my head.

If I could have one more minute with you I would tell you that I’m sorry.

I’m sorry I didn’t notice sooner.

I’m sorry I couldn’t fix you.

I’m sorry I didn’t try hard enough.

I’m sorry I couldn’t save you.

I would tell you how much we all miss you, how empty it feels at home, how painfully quiet and lonely it is without you. How much it hurts me that your gone. I would tell you how we talk about you all time, you are always on our minds.

Nothing is the same anymore, everything has changed.

I would tell you how I have my life back now, but I’d rather have you back. I’d swap in a heartbeat.

I would ask you to smile so that I could imprint your face onto the front of my mind forever.

But most of all, I would hold on to you tightly, squeezing your little body against mine. I would place my cheek against yours just to feel your warmth on my face.

If I had you back for just one minute, it would not be enough – I would want an hour, a day, a week with you.

I would want you to stay with me forever.

I’ll carry on looking for you, looking for signs that you are near by.

Previous blog post – Hospice Care Week – Changing perceptions.

I had very little knowledge of Hospices before Lennon was referred to Keech children’s hospice in 2009. There are no children’s hospice’s in Hertfordshire – The County of Opportunity. Children with a life limiting diagnosis living in Herts are referred to Keech Hospice Care. The children’s hospice at Keech covers Milton Keynes, Bedfordshire and Hertfordshire.

Lennon was 2 and Isla was 18 months old when we first visited Keech Hospice. I honestly did not know what to expect.

However, what I did know was that we needed the occasional overnight break from caring for an extremely medically complex child.

Lennon had spent the majority of his first 2 years in hospital – mainly in ICU and respiratory wise he was very unstable. He was oxygen dependant, had frequent apneas and needed resuscitation. It was a heavy responsibility at times, and we were never able to process and come to terms with the fact our baby boy was so extremely poorly.

I don’t remember too much about our first visit to Keech. We got lost on the way there and almost ended up in Coventry (quite typical of us!).

Keech Hospice sits at the end of a long lane. As you drive up, the hospice isn’t visible until you reach the end – the hedges clear to reveal the building.

I wondered if it was intentionally that way…..

We parked up and I noticed the sun shining brightly onto the building – I observed this many times over the years.

Isla fell in love with the giant bear and rocking horse and Lennon was memorised by the illuminative sensory room.

They had a comfy living room area, and a large dining room with a magnificent table where everyone ate meals together – regardless of whether you not you were able to feed orally. I loved this. I was always unsettled by the way Lennon was left out of mealtimes because he was unable to eat.

They had a outside area with equipment and toys, plenty of arts and crafts, a music room, and a hydrotherapy pool. The pool became one of Lennon’s favourite places over the years.

They also had 5 homely bedrooms, each with adjoining bathrooms and a nurses station. All fully accessible.

The staff were all so happy, calm and kind, and I felt safe knowing that when I left him for his first stay Lennon would be looked after by enthusiastic, fully qualified staff who were capable of carrying out the complex care routine that Lennon needed in order to survive. I also knew that he would have fun and be happy there.

The biggest memory that I took away from that first visit was that Keech Children’s Hospice was not a sad place where children go to die. It was a bright, happy place, with family values where children can enjoy life, and forget about their troubles. A hospice full of life.

It was about living, not dying. It was about making the most of the time you had.

Quality not Quantity.

Over the years Lennon stayed overnight at Keech many times, and the staff got to know him and his overactive personality. He loved to run around in his walking frame, seeking to banging his head on anything hard that he could find, and sat thoughtfully flicking through his Wickes catalogues (which progressed to Argos in the months before he died).

He loved the new garden especially the pond, he was there when Love Your Garden finished the project and even featured in the BBC programme.

He would always come home armed with plenty of artwork to adorn my walls. That very same artwork is still adorning my walls.

Lennon also made a point of guiding the staff down to the swimming pool every time he stayed – it was his way of communicating that he wanted to go swimming. He would stand at the window and watch people swim whilst laughing and frantically flapping his arms.

Lennon loved to swim at Keech. Once his Hickman line, then PICC lines were removed and replaced with a Port a Cath, we took advantage of the family swimming sessions that Keech Hospice offered. Because Lennon has a problem with temperature control and his blood sugars, he was only allowed to swim in a hydrotherapy pool with a heated changing room. Luckily Keech had exactly that! It was also a plus that they had a changing room with hoist tracking and a bed so that we could change Lennon’s many dressings and dry him safely after his swim.

Keech Hospice quickly became a stable, integral part of all our lives.

I took part in a fundraising campaign on behalf of Keech and went up to Capital Fm to help cycle the distance from Lands End to John O Groats.

Ian ran the 2017 Virgin London Marathon for Keech.

The kids took part in a 5k Superhero run.

Over the years we raised almost £10k for Keech Hospice. To thank you for taking care of us.

We always knew it was unlikely that Lennon would live to be an adult and over the years we speculated about the end of Lennon’s life – how, when, where. I always wanted the end to be at Lennon’s happy place, Keech Hospice – Where he would be loved and cared for right up until the moment he took his last breath.

I wanted him to be known – I didn’t want Lennon to be just another patient. A statistic.

It was important to me that the people caring for Lennon, and us, at the very end, were a part of Lennon’s eventful journey. I wanted them to of heard his deep belly laugh and his quirky quacking noises, to of seen his captivating smile and his frantic arm flapping, and to of experienced his thirst for life and proving people wrong.

In the end, we couldn’t get Lennon to Keech. He was too unstable, and I wasn’t prepared to loose him on the roadside in an ambulance.

My final wish for our precious little soldier to take his final breath at one of his favourite places had disappeared in the blink of an eye.

It wasn’t to be.

But, the staff at Keech Hospice and Addenbrookes moved mountains and Lennon arrived at his happy place just 12 hours after dying.

The staff there loved, and cared for him in the days and weeks after he died. Just like they would of loved and cared for him in his final hours. They washed him and dressed him in his page boy outfit. They talked to him and smoothed his baby soft hair.

We were able to go to Keech and visit him. In the first days I sat with him, held his hand and spoke to him. I laid my head on his chest and sobbed.I had to make a decision to stop going in there before I became too attached.

We then sat in a adjoining room – I needed to be close to him.

The staff looked after Ian and I, the girls, and our families. They served us meals, made us endless cups of tea, and shared their memories of Lennon.

They kept the girls occupied and gave us the right words to help Lennon’s sisters understand what had happened to their beloved older brother.

They mothered me and I needed them to. I felt like a lost child.

On the morning of Lennon’s funeral we drove up the long lane to Keech, just Ian and I. I thought back to the first time we ever drove up the lane and I wondered again if the hospice being hidden behind hedges at the end of the lane was significant…….

Previous blog post – 2 months.

2 months, almost 9 weeks, 61 days, since I held my little soldier tight, whispered I love you and said Goodbye.

The longest Lennon and I had ever been apart was 5 days last summer.

8 weeks seems like a lifetime, although when I think, I potentially another 40 years plus without him, then 8 weeks feels like no time at all.

I am getting up, dressed and out everyday. But the pain is still there, and as deep as it was on that day. It still hits me like a boxing glove to the chest every day when I wake up.

The sympathy cards with all their stories of Lennon and messages of love and sorrow, are still spread around our home. I can’t bring myself to take them down.

Lennon’s bedroom remains more or less untouched. His fishbowl bed still has pride of place in the middle of the room. The medical trolley is still brimming with dressings and medical equipment. His freshly washed clothes on the dresser waiting to be put away in the drawers. All his medical emergency plans and equipment lists still fixed to the backs of doors.

I know I need to sort through all of Lennon’s belongings and clothes.

But not yet, not just yet.

Keech Hospice have been amazing. Faye has been a godsend, my fairy godmother. I went to visit the hospice to collect all of Lennon’s belongings and the memory items that the nurses had made.

It felt ‘odd’ not going down to the Meadow Suite to sit with him. I had gotten used to sitting in that room with him. The feeling of coldness, and the sight of the sun’s reflection over the silver plaque on Lennon’s coffin had become so familiar to me in the days before the funeral. Faye made me tea, we shared memories and cried tears over the perfect hand and foot moulds made in the days after Lennon had died.

She took me to the Job Centre for some advice on money. She felt my pain when we left. Not only are the 10 and half years I spent caring for Lennon and working tirelessly as an unqualified HDU nurse to keep my child alive, was not recognised in the eyes of the Department of Work and Pensions, but that there is nothing anyone can do to help us financially until I feel able to return to work after my 11 year hiatus.

We also established between us, that there is no word for a bereaved parent – you lose your partner, your a widow. You lose your parents, your an orphan.

Faye also went the Children’s ward and collected Lennon’s wheelchair for us. It had been abandoned on the ward the day we left for Addenbrookes. Once the DVLA had taken the tax off our motability car we had no way of getting Lennon’s wheelchair back ourselves. Ian was planning on walking it back all the way from Lister. I had told him I thought he would find it too emotional.

Ian and Lennon spent hours aimlessly walking around at the weekends. Lennon loved to be out and about with his Daddy. Walking was their ‘Father Son’ time. Ian missed that fact that he wasn’t a football or rugby dad – I always felt their long walks together was Ian’s way of getting around that.

As well as Lennon’s wheelchair being home, his Ppod chair has taken up residence in our living room – on the insistence of the girls. They both enjoy sitting in it, watching television, and feeling close to their much loved brother. I love that they get comfort from this, but at the same time envious that my bum is not small enough for me to also curl up in the same spot and feel close to Lennon.

And that’s what I find myself doing most days – thinking of ways in which I can feel closer to him.

I bath instead of shower. Lennon loved a bath. I sit outside, close my eyes and embrace the wind on my face. I watch episodes of Yo Gabba Gabba. I spend hours looking through photos and videos of Lennon. I have even contemplated jumping on a train and visiting Great Ormond St.

Memories are lovely, but sometimes they are not enough. Sometimes I find myself wanting more than just memories.

Previous Blog Post – I would give anything

I would give anything to see this little face again.

Hold his little hands.

Hear his crazy quacking noise.

Feel his baby soft skin.

Ruffle my hand through his hair to the little coarse patch on his crown.

Have him head butt my legs.

Smile at his excitement as he watches Yo Gabba Gabba.

Get soaked whilst washing him in the bath.

Feel his little hand pat me on the back.

Listen to him belly laugh with pure enjoyment.

Squeeze his squashed nose.

Glance in the rear view mirror and see his arms flapping.

Tickle him under his chin.

Lift him into bed and kiss him goodnight.

Snuggle up behind him whilst he sleeps.

Give him one last, tight hug and tell him ‘I will love you forever’.

Previous blog post – The day I became a mum