Dominic is 11 and now in his final year at a mainstream primary school. He is very happy there and despite very complex medical issues and relying on a powered wheelchair to get around, he is thriving. But this is because he has 1 to 1 support for his medical and educational needs. This support has always been funded jointly by health and education.
At the end of the summer term, I was given the shocking news that our local Clinical Commissioning Group, Herts Valley CCG, had taken the decision to stop funding children with medical conditions in school. This decision was taken without consultation and delivered right before the summer holidays leaving parents like myself facing a long summer of no answers and no solutions being found. No one seems to think it’s their responsibility to meet the needs of these children.
Herts Valley CCG seems to expect schools to pick up the slack, with the support of their school nurse. I have never even had the privilege of meeting the school nurse, let alone can see how she would be able to help out with interventions which need to happen constantly throughout the day. And the school is in no position to be able to cover the costs having to already pay for 1 to 1 support for another child in the school who was deemed ‘not exceptional enough’ to warrant the local authority to pay for support that they could not attend school without.
The fact that HVCCG could do this without any challenge is pretty shocking, although timing it before the summer holidays was a crafty move in this respect. But they did it without measuring the impact it would have on children’s ability to access education and without a thought about what the consequences might be for the child, the families, the schools and the local area. With Exceptional Needs funding meaning that many children with Education Health Care Plans don’t get any funding to meet the provision named in their plans and now no money to help keep children with medical conditions safe in school Hertfordshire has become a place where it is financially impossible for schools to be inclusive. But it gets even worse. HVCCG didn’t only target children with medical conditions in schools. They also pulled the funding for a respite centre called Nascot Lawn that cares for disabled, medically complex children.
A group of parents came together to try and save their children’s respite centre and have seen their campaign in newspapers on television and even debated in parliament. Yet still, the centre faces closure. Why? This is the start of a slippery slope and our concern at SNJ is that it will prompt other CCGs to act similarly… targeting their most vulnerable to save a few pennies.
Heading up the campaign to Save Nascot Lawn is Nikki Lancaster who writes the blog Living With Lennon. I have asked Nikki to share just why we should all be fighting to stop services like respite being targeted by CCGs and LAs when trying to save money
Why Nascot is worth saving by Nikki Lancaster
NHS Nascot Lawn was a lifeline for my family. Proving medical care to your own child for 24 hours a day, seven days a week is gruelling - Both emotionally and physically. Getting up every two hours throughout the night, every single night is exhausting. You cannot roll over in bed and make a decision not to get up tonight because you simply don’t have the energy. You have to drag yourself out of bed and wake up enough to be competent in carrying out the procedures your beloved child needs in order to make it through to the next morning. No one would expect a nurse in a hospital to work the hours parents do, or take on the responsibility that parents take on when they are caring for their 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 nine and four year olds often got up in the mornings, made their own breakfasts and packed lunches and got themselves washed and dressed. A few nights break a month, for the child and the family is surely not too much to ask?
Herts Valleys Clinical Commissioning Group (HVCCG) hit the news in October 2017 after announcing their decision that obese patients will be required to reduce their weight before being referred for non-urgent surgery. This is just one of many recent cuts made by HVCCG to Hertfordshire’s NHS service.
Perhaps the most shocking of cuts was their decision to withdraw funding to an NHS children’s respite unit that provides overnight short breaks to children and young people with a complex health needs and a learning disability – the most vulnerable of society.
Nascot Lawn occupies the ground floor of a large Victorian house in Watford and is fully accessible to wheelchair users. The building is equipped to house up to 5 children in wheelchairs at any one time, with hoist tracking, accessible baths, a large sensory room and gardens. Not only do they provide overnight short breaks to medically complex children, they also run a unique day care service which looks after and provides health support children under 5 with a medical need.
The provider of Nascot Lawn - Hertfordshire Community Trust (HCT) website states “We aim to provide high standards of care to all of the children who stay at Nascot Lawn. We believe that excellent quality respite care should enable families to take a break from the demands of looking after their child. They can be secure in the knowledge that he/she is being well cared for and that their emotional and physical needs are being fully met by a caring and familiar team.”
Back in June 2017 the children’s families received letters informing them of HVCCG’s decision to withdraw the funding to Nascot Lawn - No contingency plans for the children and their families, no alternative service, just the naked fact that HVCCG were no longer prepared to fund Nascot Lawn on the grounds that “HVCCG have no statutory duty to make discretionary payments”, despite the NHS funding Nascot Lawn for the last 30 years.
Parents and carers of the vulnerable children began a campaign in an attempt to save Nascot Lawn. BBC Three Counties radio soon picked up on the story, a petition was started gaining over 15,000 signatures, and various news channels picked up the story, including BBC London, ITV London and channel 5. Parents even put forward 2 separate funding proposals to the LA and HVCCG with the aim of saving the unique, vital service that Nascot Lawn currently provides. They were both subsequently turned down.
A period of instability in the service began, and staff (rightly so) began to leave - Meaning the service was forced to run on a reduced amount of nights, and therefore families were to be in receipt of a ‘highly watered down’ care package. The reason HCT gave for the reduced amount of nights was ‘safe staffing levels’ – Ironically, most of those staff are registered nurses.
Parents also sought legal advice and filed a letter before claim to HVCCG. A judicial review was due to be heard at the High Court on 2nd October 2017. But on 28th September 2017, the parents and carers of the Nascot Lawn children received the welcome news that HVCCG had set aside their decision to cease funding the service at NHS Nascot Lawn. Parents were informed by their legal team that the position of Nascot Lawn would return to where it was back in June, before HVCCG withdrew their funding.
Bulldozing through people and process
This was not the case. Despite HVCCG admitting the legal advice they had previously received was faulty, parents were informed that HVCCG was to make a new decision with regards to funding Nascot Lawn. Parents and carers were given one month to ‘engage’ with the CCG and provide feedback on four options made by HVCCG that would be considered when making the final decision of Nascot Lawn’s future. That decision was made at HVCCG’s finance and performance committee meeting on the 16th November 2017. Prior to the committee meeting, the families of the Nascot Lawn children lobbied CCG staff by guessing email address, and alongside County Councillors they held a peaceful protest outside the offices of the CCG.
Throughout the ‘engagement’ process, the CEO of HVCCG, Kathryn Magson, made it very clear to families of the Nascot Lawn children that her ‘preferred’ option which she would recommend to the board would be to withdraw the funding to Nascot Lawn.
On 16th November 2017, after five months of industrious campaigning by parents and carers, HVCCG made a new decision to withdraw funding to Nascot Lawn - earning them a saving of £600,000 per year. The very next day, HVCCG handed notice to HCT, meaning that Nascot Lawn will close its doors on 16th May 2018 - Leaving 53 vulnerable children and their families across the county, with no overnight respite.
A research study recently undertaken by Contact, the national charity for families with disabled children, reported that parent carers are twice as likely to care for 100+ hours per week (24% compared with 12%). Parent carers are also more likely to be managing on a low income, and to feel they have a poorer quality of life, with restricted social and life choices. Nascot Lawn enables parent carers to sleep, shop, spend time with their other children, and to socialise - all in the knowledge that their child is being cared for by trained staff, competent in performing the complex medical procedures needed in order for them to stay alive.
How are these parents and carers expected to provide 24 hour medical care to their children, with no break and very little sleep? - I’m sure the NHS would not expect their nurses to be working 24+ hour shifts with no rest, but they seem to be expecting parent carers to.
The Chief Medical Officer annual report 2012 for children’s and young people’s health stated that by ‘providing support so that disabled children can stay at home with their parents means that £149,240 could be saved for a year’s placement in a children’s residential home’. If just four of the 53 Nascot Lawn families felt they were unable to provide care for their children without regular overnight respite, HVCCG saving of £600,000 would no longer exist.
Principle 4 of the NHS Values states “The NHS aspires to put patients at the heart of everything it does”.
Respite is vital for children with a complex medical need and their families. I say that from experience. Until my son Lennon died in August 2017; just six weeks into our campaign to Save NHS Nascot Lawn, we were in receipt of the much valued service that Nascot Lawn provides.
Lennon was a very medically complex child and required hourly medical intervention throughout the day and 2 hourly overnight; he was under the care of 16 of the specialist teams at Great Ormond St, as well as being deaf blind, autistic and wheelchair dependant. My son needed nursing care to be able to access school and to live with us at home – therefore it was vital for him to receive nursing care in a respite setting.
NHS Nascot Lawn was a lifeline for my family.
Lennon was not the only medically complex child living in our county, he was not the first, and he will most certainly not be the last. There are, and will be in the future, more medically complex children surviving - Children whose families will rely upon nursing led respite in order to carry on caring for their children at home – Just like my own family did. 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 my son 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? – Which in the long term will surely bring surplus financial costs to the NHS and unnecessary emotional costs to both the children and their families?
My perfect ending to this sorry saga would be for NHS Nascot Lawn to be fully funded by the 2 CCGs responsible for the health care of Hertfordshire, as Lennon’s Legacy. So that families, now and in the future will be able to access the nursing led respite that they need in county – close to the local hospitals that know those children so very well.
It’s what Lennon would want.
SNJ cannot understand why NHS England and the Department for Education are not stepping in to clarify the responsibilities of CCGs and Local Authorities to children with complex medical conditions and disabilities to ensure that they are not just seen as easy targets for saving money.
We were glad to hear that the High Court has, on Friday 12th January, granted Irwin Mitchel permission to take the Nascot Lawn Case back to the High Court for a 2nd Judicial Review. You can follow the campaign to save Nascot Lawn here and be sure to add your voice to the Disabled Children's Partnership campaign to force a government review on the funding and availability of short breaks services nationally.
Are you aware of other CCGS following suit in your area? If so let us know in the comments below.
Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
- The invisible condition that can scramble sound and speech: all about Auditory Processing Disorder - October 13, 2023
- Neurodiversity and Ableism – a young person’s perspective - April 28, 2023
- Where is the Best Accessible Museum for Children? Vote now! - March 27, 2023
Thanks Renata Blower & Nikki Lancaster for highlighting HVCCG’s irrational behaviour.
We’re working our socks off trying to get all the evidence in for the 2nd Judicial Review on 6th & 7th Feb! HVCCG have devastated our lives! We’re down to one night of respite a month, an unplanned weeknight which we have no choice of changing while the alternative County provision has no medical supervision at all!
Meanwhile, we are caring non stop for our children, our families are stretched beyond their capacity, siblings are even more neglected than before!
Such a shame that parents have to fight a taxpayer funded public body in court baring all our personal lives in public just to get a provision that allows the whole family to carry on functioning, caring & giving us that breathing space to help our children live their lives to their full potential!
Sham & shame! Commissioners and Good need to take a look in mirror. Could they doo this job, safely and keep their sanity while sleep deprived for years. These superb mum’s and dad’s aren’t super human just because they make it look doable. It’s fine line between coping and calamity.
“Introduction to the NHS Constitution
The NHS belongs to the people.
It is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.
The NHS is founded on a common set of principles and values that bind together the communities and people it serves – patients and public – and the staff who work for it.
This Constitution establishes the principles and values of the NHS in England. It sets out rights to which patients, public and staff are entitled, and pledges which the NHS is committed to achieve, together with responsibilities, which the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively. The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions. ”
Commissioners were also required by law to consult. Now a JR is needed because decisions were lead by budget pressures rather than consultation or constituion.
Even though this doesn’t directly affect me, I’m totally shocked at the lack of understanding and compassion for what these families go through. Who are these evil dictators making these decisions? Not only is it heartless, but if you want to get down to cold hard facts and the money issues, it’s also thoughtless and irresponsible. A lack of planning ahead and really understanding the need will lead to greater outlays needed at a later stage, whether that is money needed for residential centres or for mental health issues of parents, siblings and wider families involved. Totally sickened by the HVCCGs actions.
That’s awful. I’m sure you’ve already have lawyered up, but if you have not, please do.
I’m a mum of a medically complex toddler in Haringey, London. Our experience of our CCG is awful and they constantly fall short of their legal obligations. The only way that works is complaints and threats of legal challenges. It’s knackering, but we can’t let them get away with all the stupid stuff they come up with. Best of luck, hope justice and common sense prevails xx
P.s. I’m glad to see you are getting together to challenge closure of respite centre. Those affected by the cuts to health support to attend school should do so too. Once you can prove a breach of duty, if there is a bunch of you you’ll find law firms being much more intetested bringing compensation claims when they can for it for a group.
Entirely understand this, our daughter is also one of those affected by HVCCG’s senseless and callous decision ?.
Since then we now have no medical funding, refusal to assess for EHCP, turned down for ENF/HNF and 1:1 school support being removed as of Sept, all with the expectation that a 7yr old learns to be more independent so to ‘mitigate the impact’ of the lack of adequate support due to a lack of budget. Why does no one want to help a disabled child safely access a full education? Why is no one being held to account? Who will take responsibility? Sickening, shameful and illegal behaviour across the board.