Ask, Listen, Do

Do you care for a child or young person with a learning disability, autism or both? Have you ever raised a concern or a complaint about the education, health and social care services they receive? And you have been left feeling frustrated by the response you received?

Then you may well be interested in NHS England’s Ask, Listen, Do project which Cerebra is now involved with. The project is aimed at supporting organisations to learn from and improve the experiences of people with a learning disability, autism or both, their families and carers when giving feedback, raising a concern or making a complaint.

The project includes the development of resources to support good practice in organisations across health, education and social care, and guidance for people, families and carers so that they feel empowered and confident to speak up.

The project listened to people’s experiences of giving feedback, raising concerns and making complaints at events all over England. They also carried out a survey which nearly 1,300 people took part in. Some of the main results from this survey were:

  • Nine out of ten people said that they had wanted to raise a concern or make a complaint at some time
  • Two out of three people said they sometimes or never knew how to do this
  • Seven out of ten people said that they did not feel that their complaint(s) had changed the way the organisation supports people as a result.

As a result of the survey Ask, Listen, Do realised that feedback, concerns and complaints systems (and safeguarding and access to justice) do not seem to work as well as they should across education, health and social care for children and adults with a learning disability, autism or both and their families.

That reflects in part their journey through many complex systems in education, health and care and the many barriers and difficulties they face. The systems and processes are also very complicated. There is also not a good enough understanding about how to listen to families or children, young people and adults, and the reasonable adjustments needed to do that. People and their families are often not included or do not feel that feedback and other systems work for them and do not take part in them.

It must also acknowledge a perception that sometimes families can be seen as difficult and challenging, which can get in the way of organisational listening and learning.

Who do they work with? They are working with national partners, including the Local Government and Social Care Ombudsman, Parliamentary and Health Services Ombudsman, Directors of Adult Social Services, Local Government Association, Care Quality Commission, Department for Education and others, along with families and people themselves. The idea is to work together to help all organisations make it easier for people and their families, children and adults, to give feedback, raise a concern and make a complaint and to know that it will make a difference through the Ask, Listen, Do approach, set out below:

and through the Ask Listen Do principles, set out below:

Ask, Listen, Do are seeking to influence and change organisational behaviours and approaches through the Ask., Listen, Do approach and the help of families, carers and national partners in education, health and social care.

One example already achieved is that NHS Improvement will include Ask, Listen, Do in their new learning disability standards which is to be issued soon. Another example is that the Department for Education commissioned Whole School SEND to work with families and NHS England to coproduce a guide to help make conversations about their children and young people count for all families in all schools. This can be found here.

They have also produced a Top Tips leaflet for families to help empower them in understanding and dealing with these complex systems, and training and other resources to support organisations.

The project is now launching on social media at #AskListenDo and you can find out more about Ask Listen Do on their website.

Overcoming sleep terrors

In this article we take a look at what sleep terrors are, give advice on how to overcome them and explain how our Sleep Service helped Rachel and her mum.

Like any other ten year old, Rachel was desperate to have a sleep over at her friend’s house. However, Rachel has autism and the anxiety she experiences meant that she felt unable to sleep without her mum in the bed with her. She had never managed a full night in bed by herself.

Her mum, Helen, was also concerned about Rachel’s screaming episodes during the night when Rachel would run around the house, appearing terrified and screaming, but unaware of her surroundings. Her GP explained to Helen that these were sleep terrors (sometimes called night terrors) and were likely to be just a stage that Rachel was going through.

Rachel’s sleep terrors sometimes happened twice during the night and Helen was worried about Rachel’s quality of sleep as well as the disruption caused to the whole family. Needing advice and support Helen contacted Cerebra’s Sleep Service.

One of our Sleep Practitioners, Pattie, gave Helen some information and advice on sleep terrors.

If your child is experiencing sleep terrors, it is important to seek medical advice to confirm the diagnosis and to rule out any other causes for the behaviour.

What are sleep terrors?

Sleep terrors are episodes that can that occur when a person is in a deep stage of sleep – usually within the first few hours of going to sleep. NHS guidance says that they most commonly occur between the ages of 3 and 8, but that a child’s developmental age may also need to be taken into account. When experiencing a night terror a child may:

  • Appear frightened
  • Scream
  • Cry
  • Thrash around
  • Appear confused
  • Not respond to the parent / carer or push them away

It’s important to be aware that although the child may seem agitated, they are likely to be unaware of this event and probably won’t have any memory of it in the morning. It’s more distressing for the person who witnesses it. Episodes usually last less than 15 minutes but in younger children, or in those with developmental delay, they may last quite a bit longer.

Some things that may make sleep terrors worse:

  • Changes in sleep patterns
  • Infections/ fever
  • Anxiety/ stress
  • Inadequate sleep
  • Medications that causes certain changes in sleep
  • Caffeine
  • Sleeping with a full bladder
  • Noise and light
  • Sleeping in a different environment
  • Sleep-disordered breathing
  • They may occur more frequently in certain conditions, for example Tourette Syndrome
  • Family history of night terrors or sleepwalking

Suggestions which can help you to manage sleep terrors:

  • Keep bed and wake times consistent
  •  Sleep deprivation can make it worse, so ensure that other sleep problems are managed where possible
  •  Ensure your child is in a safe environment
  •  Inform other caregivers e.g. if your child attends respite or sleepovers etc
  •  Avoid stimulants e.g. caffeine
  •  Avoid waking your child up during an episode as this can prolong a night terror or cause agitation
    If your child leaves the bed then gently guide them back to bed
  • Avoid comforting or other interference as this can also prolong the episode
  • Avoid discussing it with your child the next day as this may cause anxiety, and possibly more disturbed sleep
  • If the episodes happen at a predicated time each night, you could try scheduled waking. This is where you wake the child up 15 minutes before the episode occurs for a few nights (or more in some cases) and then let them go back to sleep and this can often break the cycle.

How did Helen and Rachel get on?

Since Rachel and her mum were also keen for Rachel to be more independent at night-time, Pattie also advised them on how to implement gradual withdrawal. This is a method which involves gradually increasing the distance between parent and child over a period of time. In this case, Helen used a camp bed and set this up in Rachel’s room. Every few days Helen moved this gradually a bit further away from Rachel’s bed until she was out of the room.

She also worked hard to ensure Rachel was calm at bedtime with a relaxing routine as well as keeping the wake times consistent each day (including weekends). You might find some tips in our Anxiety Guide useful.

After two months, Rachel’s sleep terrors had reduced considerably, and Helen got in touch to say how pleased she was that Rachel had managed to sleep over at her friend’s house for the night. Rachel also called Pattie first thing the following morning, as she had been so happy that she had managed to do it!

If you’d like some advice on managing sleep terrors, or other sleep issues, don’t hesitate to get in touch with us.