Exclusive: Overcoming the barriers to hospital discharge for children with complex needs
More children are remaining in hospital because parents are not supported properly
WellChild report reveals that three quarters of professionals have no protected time to deliver training to parents and carers
There are estimated to be more than 70,000 children in the UK living with complex care needs. Many face long stays in hospital, where they receive care from dedicated staff.
Once discharged, support may be provided by nurses in the community, but most of the time it is the child’s family who provide the care.
As a result, parents and carers require a huge range of skills, from dealing with long-term ventilation to tube feeding.
But, to date, the way these training needs are addressed is patchy, according to research by WellChild.
After holding a summit on the issue in 2015, the charity warned that a problem was brewing. Since then it has been digging deeper into what is happening.
A Freedom of Information request revealed that NHS trusts are seeing that children remain in hospital because parents are not being supported properly.
children with complex needs in UK
Source: Council for Disabled Children (2017)
Meanwhile, a recent survey of 57 family members and 36 healthcare professionals (mainly nurses) has provided more evidence of the challenges faced by parents.
Three quarters of professionals reported that they have no protected time to deliver training to parents and carers.
Families also expressed concern that when they do get training, they are not always provided with ongoing support – 86% said they do not believe their competencies are being reassessed or reviewed.
WellChild director of programmes Linda Partridge says there is a ‘paucity’ of guidance in this area.
Variation in standards
The research shows that NHS trusts were relying on a combination of national guidance, their own internally-developed protocols and practices established by other trusts.
She says this was creating a ‘wide variation’ in standards. ‘While some families are well supported with continuing healthcare packages, others get very little, if any support at all.’
3 out of 4
of healthcare professionals do not have protected time to provide training to parents and carers
Source: WellChild (2018)
The charity funds a network of 40 specialist nurses to care for children with complex needs.
All provide an element of parent training as part of their work, but only one post is fully dedicated to it.
The charity is looking to fund more of these trainer posts in the future.
But with a wide range of other staff providing training and advice, from community nurses and ward staff to occupational therapists, physiotherapists and doctors, the charity has also decided to produce a set of standards – 11 principles for better training – to ensure more consistency.
The principles are:
- Safety – the child must be kept safe at all times so training should not take precedence.
- Governance – trainers have an obligation to maintain and consistently evaluate their skills.
- Preparation and managing expectations – initial meetings should establish what training is needed, what experience has been gained so far and the emotional state of the learner.
- Roles and responsibility – trainers should have specialist knowledge, and experience of planning and delivering training.
- Training environment – an area with minimal noise and distraction is needed. Consideration should be given to providing some training in real-life environments, such as home.
- Access to training – the trainer should recognise the learner has to balance the demands of their personal and professional lives.
- Training delivery – training should be tailored to the needs of the learner and include the opportunity to practise skills.
- Assessment of capability – should be embedded throughout the training journey and accurately recorded regularly.
- Managing and overcoming difficulties – the trainer and learner should be prepared to work together, and provide feedback regularly.
- Sustaining capability – retraining should be expected to ensure skills and kept up to date.
- Wider family – training and awareness-raising may need to be given to others.
Ms Partridge hopes the principles will help ‘drive change’. The principles have already been welcomed by NHS Improvement.
of parents do not have training reviewed or reassessed
Source: WellChild (2018)
NHS Improvement head of children, young people and transition Angela Horsley has praised the principles for providing a ‘clear focus’.
She says: ‘Improving the training we provide is an imperative for the NHS. For this to happen, health and care professionals need to be committed to learning and changing.’
University of Hertfordshire professor of community children’s nursing Mark Whiting agrees the principles will help address some of the problems.
He points out that, due to advances in medicine, parents are being asked to provide the kind of care that 15 years ago could have only been provided in hospital.
But he adds: ‘It will require both a fully-staffed community children’s nursing workforce, and closer working relationships between hospital and community-based staff.
‘Digital technology, such as Skype and FaceTime, could be used to allow hospital staff to work more closely with parents and community nurses.’
A parent trainer’s view
Esther Bennington became WellChild’s first dedicated parent trainer nurse two-and-a-half years ago, at Alder Hey Hospital in Liverpool.
She says: ‘What these parents learn to do is amazing. We’re talking about incredibly complex medical care.
‘The illnesses their children have can mean they learn four or five skills: suctioning, tracheostomies, manual handling, basic life support and ventilation.
‘It’s not just about day-to-day care, they also need to know what to do in an emergency to save their child’s life.’
She says the training can take weeks or month, depending on the level of experience the parents have gained over time, but it is also essential to remain in regular contact with families to make sure their skills are kept up to date.
‘It’s about building up confidence as well as competencies. The first thing I will do is meet the parents to discuss their previous experience and work out a plan.’
She uses a training suite, Better at Home, based at Edge Hill University, where parents and carers can practise the skills needed in a simulated home environment.
‘I try not to do it by the bedside. There’s lots going on and lots of distractions. But as parents gain confidence, they start doing things with the ward nurses – observing at first, then helping and finally doing it under supervision.’
One mistake could have been serious
Hayley Smallman understands the value of being given the right support to look after her daughter Holly.
Holly is 16 and has complex, life-limiting health conditions including cerebral palsy, chronic lung disease and epilepsy.
She has been taught about tracheostomies, nebulisers, what to do during epilepsy seizures and how to work breathing equipment.
She recently needed all these skills, as well as the ability to remain calm under pressure.
Holly had viral pneumonia, but the medication had had an effect on her epilepsy and she started experiencing seizures and vomiting. She then began to choke.
Hayley and her husband had to clear her airways and carry out an emergency tube change while making sure no foreign objects got into her lungs.
‘One mistake could have had serious consequences. It’s thanks to the excellent training we had that we could cope.’