Getting a diagnosis can be a particularly difficult time for families of disabled children. Parents are often hit hard by a lack of clear information and practical and emotional support on their diagnosis journey.
Over the next five years, Scope is delving deep into the lives of 23 disabled children and their families for our pioneering research study, Our lives, our journey.
The study will focus on four specific groups of people, each representing a different important moment of change:
- Disabled people who have recently started a new job
- Parents of early years disabled child
- Disabled people who have recently acquired an impairment
- Disabled people entering adulthood
Scope’s findings so far have given a rich, compelling but sometimes concerning insight into the lives of disabled families. We don’t know of any other study of this kind.
We found – across the board – that diagnosis support from the NHS and local authorities is patchy and inconsistent.
Diagnosis during pregnancy
Diagnosis during pregnancy was particularly challenging for our parents. Mums and Dads had to deal with tough decisions like whether to undergo additional tests, which may cause risks to their unborn child. Without the right support in place, deeply worried parents often ended up taking to the internet to research complicated and sometimes harrowing medical information.
In some cases, NHS specialists gave parents the option to terminate their unborn baby. Those parents felt strongly that the health system was geared towards pushing termination.
Richard and Cheryl were given the option of a termination numerous times throughout their pregnancy;
‘… I was probably told about seven times in various appointments in the sixteen weeks before he was born, ‘You don’t have to go through with this, you know’ or ‘there are other options.’ I was 36 weeks at that point. I do remember the specialist nurse going out after the appointment with us and sitting in the waiting room because I was just so upset that this doctor had suggested that, you know, we terminate at that stage, and then, two weeks later, he was born. Yes, at the time, it was very difficult to get your head around. Very emotionally distressing…’
Richard and Cheryl, Dad and Mum to Alexander, Aged 3
Many of the parents were only offered NHS counselling if they were to choose to have an abortion. Counselling is not available if parents continue with their pregnancy. Because of this, parents felt that the NHS denied them an ‘impartial’ counselling support option. Because, if counselling support was to be made available, it should be to help prepare parents emotionally for the birth of their disabled child.
Birth and first-year diagnosis
Our Mums and Dads told us that mostly they’d experienced good NHS care and support for their children. In some cases, where their children went through complex post-birth surgery their parents were extremely grateful for the exceptional medical support their children received. They also appreciated NHS practical support, with everyday things such as baby feeding challenges. Encouragingly, they found that NHS staff were mainly empathetic when letting parents know about their baby’s diagnosis.
Early years diagnosis (aged 1–5 years old)
Children diagnosed with their condition in their early years mainly received Autism, physical and sensory condition diagnoses.
Unfortunately, most parents told us that NHS diagnosis follow-up support was lacking. Despite being in early years with starting school not far away, parents of children diagnosed on the Autism spectrum were only given a basic condition booklet by medical specialists.
‘We were given a book to take away…I didn’t find the book particularly helpful. I think especially once you first get the diagnosis like we got…I think the local authority need to be better prepared and more geared up to make support available at point of diagnosis.’
Shell, Mum to Oliver, aged 4
Parents like Shell felt unsupported. It was concerning there were no links to advise on essential local authority support such as education health and care planning for school.
Connecting with other parents of disabled children, both face to face and online is an enormous source of support for most of our parents. Having this positive and empathetic support helped them start to focus on making positive future plans for their children and families.
Some of the children from our families had emerging or rare symptoms, which meant delayed diagnosis and ongoing tests. These families were seeing specialists at children’s hospitals such as Great Ormond Street Hospital.
The need for practical and emotional support for parents and their children doesn’t stop at diagnosis. From pregnancy onwards, parents are spending time, effort and emotion fighting a support system that often isn’t working for them. It’s high time the government, councils and NHS professionals listened more intently to the voices of disabled families.
At Scope, we’re working to make sure families can get the support they need so that their children can fulfil their potential and access the same opportunities in life as everyone else.
You can find support, information and advice at scope.org.uk.
Scope is part of the Disabled Children’s Partnership (DCP). The DCP has identified that there is a £434 million funding gap in children’s social care. That means that every day, disabled children are missing out on £1.2 million of support from authorities. So, the DCP has joined forces with The Sun to call on Government to give this back. Add your support to the #GiveItBack campaign here.