Maisie is a 13- year-old girl who has autism. She self harms and because of this she is currently under Section 3 of the Mental Health Act. She has been placed into hospital, 60 miles away from her family home.
SANE, the national mental health charity, the National Autistic Society (NAS) and Hull and East Yorkshire MIND, are all backing the Get Maisie Home campaign, which was launched in January 2015 by mother Sally Burke.
The aim of this campaign is to reinstate 24/7 care for Child and Adolescent Mental Health Services in Hull and raise awareness of how the closures of mental health units is impacting on our nation’s children.
Maisie, Sally’s daughter, is one of the many children who is affected. When Maisie was just twelve years old, following the death of her father, she was found self harming and attempting to take her own life. However, due to the closure of Hull’s children’s mental health residential facility ‘West End’, she was forced to travel to a unit in Stafford, 120 miles away from home. After a month there and only after intervention from MP Alan Johnson, a place was found a bit closer in Sheffield, but this was still 60 miles away from home. During her stay in this unit, she was diagnosed with autism and once her health had improved, Maisie was discharged home at the beginning of April 2014.
The next few months were a little more stable, but despite receiving support from the local CAMHS team and school; Maisie struggled to reintegrate back into home, family, school and community life.
Sadly, towards the end of November, Maisie started showing signs of distress both at school and home. Without 24/7 CAMHS support and the appropriate intervention, this escalated to crisis once again with an attempted overdose. It took 5 long, self-harming days to find an available bed, which again was in Sheffield and she was admitted there on the 3rd December. She stayed there just over four months, but had to be transferred to a more secure unit in Bury, Lancashire on 11th April 2015. This was due to Maisie escaping on four separate occasions, trying to get herself home.
Being so far away from home is damaging Maisie’s recovery and it is an extremely difficult time for her family – financially as well as emotionally. Each trip is costly and limits the times that Sally can visit. It also makes it extremely challenging for other family members and friends to visit too, when they have to plan such long hours travelling there and back, when all they want to do is spend their time seeing Maisie. On a couple of occasions, visits have had to be cancelled last minute due to road works, stand still traffic and bad weather conditions. Being far from home causes additional emotional distress for the child and everyone else.
“My child is ill and as her Mum I would expect to see her, cuddle her and reassure her every day,” says Sally. “As her Mum I need to be there when she needs me. As her Mum I should be able to hold her hand through her recovery and not being able to do so is heartbreaking. Knowing my little girl is so far away, alone and homesick is harrowing. I’m exhausted, physically and mentally, and I feel helpless.”
Mark Lever, chief executive of the NAS, said:
“Too many children who have autism and complex mental health conditions, like Maisie, have to travel long distances to access essential emergency support. Children who are unwell and in crisis need to be close to home and, for children with autism, being near their support networks can be especially important.”
Marjorie Wallace, chief executive of the mental health charity SANE, said:
“It is shocking that a girl as young as Maisie should have to be placed in a unit so far away from her home just to receive the support and treatment that she needs. No child should be separated from their family, especially when in crisis. If a safe place for people in crisis and long-term need is not provided locally, more families will be put under intolerable strain and patients will become even more neglected.”
David Smith, Chief Executive of the charity Hull and East Yorkshire Mind said:
“We have spoken to a number of local families who have found themselves in this stressful and deeply worrying situation. Whilst understanding the need to rationalise specialist resources we believe everybody should have access to speedy, local mental health services and that maintaining family contact and support networks forms a critical part of an individual’s recovery. We hope to see NHS England proceed quickly with their review of specialist services and expect them to consult fully with families and local people directly affected by the situation.”
Sally’s and Maisie’s story is not unique. Many other vulnerable children in the Hull area have been forced to travel out of the city to receive care since the West End unit stopped taking residential patients in 2013.
Another mother from Hull is facing a 300-mile round trip to visit her fifteen year-old son who is in a mental health residential unit in Northumberland. It takes her 10 hours in total to travel this distance on public transport and on many occasions she has had to spend additional money on staying in a hotel.
Skylar Clegg, now sixteen, was just fourteen when she was sent over 100 miles from her home to a unit in Manchester, and then to a unit in Sheffield only a few months later. She found the experience very stressful and found that it made her condition worse: “The people on the ward were a few years older than me so I felt intimidated and I missed my friends and family; because I was so far away, none of them could visit. I got homesick every day and spent most nights crying and wanting to leave.”
Since launching the campaign, Sally has become aware of another twelve families in the Hull area who are in similar circumstances. The Get Maisie Home campaign is centred on a petition demanding NHS England to urgently reinstate an inpatient unit for children with severe mental health problems in Hull. It also highlights the lack of professional help and support for families and is calling for CAMHS staff to be available 24/7, not just the current Monday to Friday 8am to 5pm. Sally says ‘our children’s health is important to us every single day of the week and whether it is day or night. All children in this country should have immediate access to appropriate, expert treatment and state of the art facilities close to home – regardless if it is mental or physical illness – every single child deserves this’.
So far, over 25,000 people have pledged their support with the petition, signing either on-line or on-paper versions. This is driving awareness and also leading supporters to the campaign on Facebook ‘getmaisiehome’ and Twitter @getmaisiehome.
101 balloons were released in the centre of Hull to mark Maisie’s 101 days away from home and there was an Easter Sunday Family Fun Day, to raise awareness and funds for the supporting charities, SANE and the National Autistic Society. Media activity has included a live interview on ITV; recorded TV features with the BBC and articles in local, regional and national newspapers. Sally has also appeared on local radio many times and also taken part in a phone-in with like-minded people at Tantalk1340 in Tampa, Florida, USA.
Sally will continue to raise awareness of her campaign to reinstate the facilities that her daughter and many others need.
The petition – Reinstate Child and Adolescent Mental Health Services in Kingston upon Hull, can be found on the following link