I’m fighting for the future of my disabled daughter’s care

A smiling girl in an accessible buggy with a smiling woman and a smiling boy and girl who are wearing cycling helmets

When I first took my disabled daughter to Nascot Lawn Respite Centre – the only NHS overnight and daycare centre in Hertfordshire – I never imagined it would become one of the most important places in our lives. So when the service was threatened by closure last year, I didn’t hesitate to lead the legal challenge to reverse the decision.

Beating the odds and winning two judicial reviews meant the parents from Nascot Lawn raised the importance of short breaks and social care funding for all disabled children to a national level. But now, with only three staff members left, the gem of Hertfordshire is on the brink of extinction and my daughter’s future uncertain.

My daughter’s story

A smiling girl wearing a party hat, hugging a toy reindeer

My daughter, Gurpreet, was born with a rare chromosome disorder. Nothing was diagnosed during pregnancy. So after she was born, it was a massive shock when doctors quickly diagnosed Gurpreet with chronic renal failure, bilateral renal dysplasia, microcephaly, short neck, low placed ears, respiratory stridor, five different heart conditions (requiring open-heart surgery to resolve), very low body weight, very short in height, failure to thrive, severe reflux, ptosis of the left eye…. the list goes on.

Gurpreet spent the first three months in hospital. Only her emergency transfer to Great Ormand Street Hospital (GOSH), at just two days old, managed to bring her complex medical health issues under some sort of control.

By the time she was one, Gurpreet had already had two major surgeries on her heart and abdomen  – both changed her life immensely. She now had some energy to move her limbs and we could feed her through a tube placed directly into her stomach. Importantly, Gurpreet now started to put on some weight and learned how to sit up. This is when she started her new life at Nascot Lawn, having been referred by our Special Community Nurse.

Gurpreet’s care at NHS service, Nascot Lawn

A girl in a wheelchair with a smiling young boy and young girl stood either side. They are standing outside a building. The sign reads "NHS - Welcome to Nascot Lawn"

Gurpreet started day care sessions every Friday term-time four hours a week. And so, for the first time, I actually had a break from caring 24 hours a day as Gurpreet was in the care of specially trained healthcare staff.

Time flew so quickly. Gurpreet started at a local school for children with physical and neurological impairments, and soon after moved to overnight respite. By now, she had a younger sister and brother – Amy and Ekraj, who  were competing for my attention too. They are both loving and compassionate young carers to Gurpreet, and both spent much of their pre-school years at GOSH with Gurpreet, and had to grow up and be independent well before their time.

Gurpreet’s overnights at Nascot meant I got a break from caring, as did her siblings who I got to spend some quality time with, doing the little things that mattered so much to them – like cycling in the forest, going to the park, travelling on the train and walking on the clifftops in Devon.

Gurpreet, meanwhile, loved Nascot. The staff adored her, and their care was unrivalled. She learnt to be independent from me and have others care for her overnight. It was the perfect formula and what I needed to balance the children, the house and my life.

Funding cuts and a legal battle

a pile of legal papers that say 'agenda'

It all came crashing down, ironically during Carers Week in June last year, as Herts Valleys Clinical Commissioning Group (HVCCG) decided to cut Nascot’s funding without any notice, consultation with families, or proper knowledge of any alternatives.

It was only a matter of hours before the Nascot families rallied together and decided to campaign against the closure of Nascot, starting a campaign that would change all their lives. I was asked to take up the legal challenge. I agreed straight away.

The amount of preparation, meetings, notes, letters, emails, calls and conference calls we undertook in almost two months to get a judicial review granted was phenomenal.

Among the Nascot parents group lay amazing talent. By the end of July, we had an online petition with almost 15,000 signatures. The Nascot story was front page news in all the local papers. Local radio stations had interviews with families who also featured on major national television stations.

Families and their supporters contacted their MPs and County Councillors, which led to a Public Health Scrutiny by Hertfordshire County Council in the summer.

Support from charities and campaigners

A smiling woman with her daughter

We were very fortunate to have the national support of the Disabled Children’s Partnership, of which Sense is a member, and the charity Together for Short Lives. They supported us to meet with Baroness Brinton, and Lord O’ Shaughnessy at the House of Lords to present them with an anonymised dossier of each family’s situation. The dossier was heart rending. We showed them how the most vulnerable children in the county were about to lose the only provision that supported them, and allowed their families to function.

The whole summer was spent in meetings, preparing notes, reviewing legal papers and preparing for the judicial review.

Finally at the end of August we had a date. The preparation continued. Gurpreet, Amy and Ekraj came to every meeting in the evenings, as I had no one else to care for them.

Amy and Ekraj campaigned too. They made a short video on how important Nascot was to Gurpreet and them. I overheard Amy telling a young carer support-worker that if Nascot closes “Mum will have even less time to spend with me”. That broke my heart.

Mornings were spent reviewing emails, Emma and I often worked late at night, reviewing legal paperwork, learning all the terminologies and processes. It was exhausting.

Our solicitor, Alex, was so patient and worked equally hard. He taught us all about the legal aid applications (they are long!), arranged numerous conference calls to keep up to date with the daily movements of our campaign, and also did his fair share of media interviews, often up with us at 7am!

Talking to the media quickly became second nature to us. Amy and Ekraj began to enjoy the campaigning. Gurpreet was so oblivious to what was happening at Nascot, there was no way to explain it to her. Instead, as her nights at Nascot rapidly got cut from four a month to two and then one, she felt the difference. Her routine was gone. The only place she had her own independence in an overnight setting was gone. By December, we were at one night of respite a month, as we are now.

Funding was supposed to return to normal, but was cut again

A girl in a wheelchair sits next to a Mickey Mouse display

A week before we got to court in October, Herts Valleys Clinical Commissioning Group (HVCCG) buckled and a court order retracted their funding decision. Nascot’s service and funding was supposed to return to normal. It never did.

The uncertainty caused by HVCCG decisions meant the majority of the loved and long-serving staff at Nascot had left. They left in tears and we were powerless to keep them. They had families to support, mortgages to pay. We wished we could win the lottery.

We were elated to win the first judicial review, but that for all the families, that feeling quickly evaporated as HVCCG made known their decision to ‘engage’ with families and make a new funding decision by mid-November.

Families again campaigned on social media, with their MP’s, and on a national level. By the end of November, HVCCG made a ‘new’ decision to cut funding.

One battle after another

A smiling woman and young girl pose for a selfie

On a personal level, it’s been a very hard struggle. I was not only battling in the High Court for Gurpreet’s future, but I was also fighting my very stressful divorce case at the same time. After suffering many years of domestic abuse, my ex-husband had been convicted of assaulting me, and I found myself on my own, supporting my three children. He told the court I could never cope without him. Truth is, I always had.

Nascot was the only support Gurpreet had during this hard time. It also provided me and my children the time to spend together to talk about our future, and for them to know I will always be there with them.

For the first time, I took Amy and Ekraj for a weekend to Eastbourne, whilst Gurpreet was at Nascot. That was a big turning point for us as a family.

The second judicial review was even more demanding. All over again, we prepared witness statements, reviewed the defendant’s evidence, it was probably the hardest time for us.

Our children’s personal lives were laid bare in court, we actually had to prove how medically complex they were. Finally, after weeks of late nights and working at weekends, one day before Christmas, we filed our paperwork. We worked through the Christmas holidays, reviewing replies filed in court and defendant statements. At the first review we had three box files of evidence, by the second, we had six. I had sent over 2,000 emails to our solicitor. The wait for the second judicial review in February 2018 fraught with anxiety for everyone.

My story on BBC Panorama

Earlier this year, Gurpreet was chosen by BBC’s Panorama to feature in a documentary they were preparing about the lack of funding in social care. It was exciting, daunting and tiring at the same time. It gave me a chance to tell our story, and the they followed us whilst we were preparing for the second judicial review. That second review was emotionally draining. There were highs and lows. Parents were often in tears. Our solicitor Alex, our QC Jane and Barrister Sian did a fabulous job on an extremely complicated case.

You can watch me talk to Panorama about Gurpreet on the embedded player below, or view it on the BBC News website.

A short-lived victory in the courts

It was during half-term in February this year that our solicitor, Alex, told us we’d won. What a victory! Emma, Angelina and I, were beyond excited, but weren’t allowed to tell anyone till a week later when the ruling was passed.

The day of the Ruling was a very proud day for all Nascot families, past and present. We had finally won the second judicial review. The judge quashed the decision to cut funding and declared that Nascot was a health service, and if an agreement over funding couldn’t be reached, the case would be referred to the Secretary of State. What a result! We were covered by the Disabled Children’s Partnership, national TV and all the local media.

We revelled in our victory, but also knew there was a lot more to be done to keep Nascot Open. Once again, we lobbied our MP’s and County Councillors. Baroness Brinton has been supporting us all the way through, and continues to keep Nascot on the agenda in the Lords.

An uncertain future

A black and white photograph of a smiling woman hugging a young girl

Despite our legal victory, Hampshire Hertfordshire County Council continued to debate the future of Nascot.

And then, one day I was completely shocked to suddenly receive a letter which said Nascot would be closed after all.

Families are now being encouraged to move to alternative social care respite centres with the promise of nurse supervision at some point. This is despite the fact that social care respite centres are a long distance from Nascot, and many are over-subscribed. Some families have already had their one Nascot night stopped, with a gap of six weeks without respite until the Hampshire   Hertfordshire County Council provision can take them on.

The service at Nascot has been run into the ground. Only three staff members are left, the gem of Hertfordshire – which we were all so proud of – is on the brink of extinction. We were never precious about the building, it was always the service and the NHS Health staff.

The closure of Nascot will have a profound and lasting impact.  Since August last year, four Nascot Children have died. This is heart-wrenching evidence of how fragile our children’s health is.

There is a reason they’re at Nascot – they were referred by the NHS because of their complex health needs. Now there is no similar service to refer children to.

For me, it’s now impossible to plan anything at all. Life had a perfect balance, I used to look forward to the one morning I could sleep in till 7.30am, when Gurpreet was at Nascot. Or the one evening I could relax without having to worry about the non-stop routine. All that is gone.

The uncertainty all this brings is tremendous. But we will get through it. Gurpreet deserves it. She is the most amazing girl. Sixteen surgeries later, she is always smiling, always happy, and ever so cheeky.

Every day with Gurpreet is special. She really is the light of our family.

Satnam Kaur

Author: Satnam Kaur

Satnam is the mother of Gurpreet, who is disabled. Satnam led a court case to keep open the NHS service, Nascot Lawn, that provided valuable respite care to Gurpreet.

2 thoughts on “I’m fighting for the future of my disabled daughter’s care”

  1. This is so crazy it makes me angry. Thanks for sharing your story, its great ot hear its starting to get some of the media coverage it deserves.

  2. Just watched the piece on BBC. I have been very moved by how despite all your responsibilities you have managed to keep going and fight . I am ashamed that our society has not valued all the hard work you and your younger children have put in day in day out caring for Gurpreet. Your are only asking for what should be given freely. Best wishes to you and your lovely children . Liz

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