Having a break: good practice in short breaks for families with children who have complex health needs and disabilities

What are the positive characteristics of the new models of short break services?

Traditional provision of short breaks takes the form of residential care solely for the disabled child. By way of contrast, the new models have the following characteristics.

They are flexible and responsive to the whole family’s needs

Different kinds of service are provided at a time and place that suits the whole family, such as on Saturdays. Staff are also very flexible in what they do.

The nurse can accompany the whole family on an outing, for example to a wedding, so the parents can relax, spend time with all their children and be freed up from nursing duties.

Staff member, South East Essex PCT

We are flexible as we can be … especially for families in crisis. We have to provide support and services when they are needed, which is not always planned for. Families need to be able to cancel or book at short notice … It is about supporting families to say what they need rather than telling them what’s on offer.

Staff member, Rainbow Trust

It’s not easy to cope and we take one day at a time. A short break makes it a bit easier … It is difficult to plan as we don’t know what is going to happen to my child.

Parent

I enjoyed being able to give all my attention to my daughter as the staff saw to our other needs.

Parent

It was nice spending quality time as a family all together – something we haven’t done for a while. We all arrived tired and stressed and we are leaving relaxed and full of energy.

Parent

Good practice example

Nascot Lawn, Watford is very flexible about the support they offer. For example, they can provide ‘short notice care’ (not emergency) which allows a family to decide they need a break in the day at very short notice and phone up and ask for time. This sometimes involves asking other families to agree to a swap. Most will try to be flexible, as they recognise it may be their family who needs to be accommodated next time.

The siblings of children with complex health needs are also offered support and care themselves.

Our staff often work with siblings who are struggling at school or home. There have seen several cases where a sibling has been reintroduced to school and their behaviour has improved considerably ... when at the beginning it was thought a referral to mental health service might be necessary.

Staff member, Rainbow Trust

I was worried about my son aged four because he was really affected by his brother's death. The staff at the residential unit brought him out of his shell and let him have some fun time.

Parent

The short break service allows us to have 'me' time and helps us to feel normal and allows family activities with our other children.

Parent

Good practice example

The Southern Health & Social Services Board (SHSSB) in Northern Ireland has developed young carers’ services for all siblings. Families have the option to fast-track this service, avoiding the stigma of going through social services.

They are based at home or in the community

Home-based care is preferred by many families, although some parents find this does not give them a complete break from the daily routine. A flexible approach is required to satisfy both the children’s and the parents’ wishes.

By taking part in activities in the local community disabled children are helped to feel they are living ‘ordinary lives’.

Good practice example

The Government’s Disabled Children’s Access to Childcare pilot projects are developing networks of ‘specialist childminders’. These will make it easier for parents to find flexible childcare that meets their needs (including overnight and home care) and help disabled children to participate in play and leisure activities in their own communities.

They ensure continuity of care

Services that provide continuity of care over time are highly valued by disabled children and their families. It allows them to build good relationships with staff, develop trust and feel confident that their needs are recognised and understood.

We ensure continuity of care wherever possible by working in partnership with the local community health trust and maintaining strong links with local special schools and other professionals working with the children.

Staff member, The Hamlet Centre Trust

The same staff move between the hospice and people’s homes, providing care based on knowledge of the individual children.

Staff member, Mid Essex PCT

Good practice example

The Rainbow Trust Children’s Charity typically provides support to families with sick children for two or three years. Some support lasts a lot longer, up to 10 years. Families can opt out of receiving support at any time but can also opt back in again if they need to. They can even choose to continue using the services after their child has died. They can receive home visits from a family support worker or take a break at one of the residential units. Many families do come back to the home for short breaks, as they feel it is a place where they can grieve and gain support from staff who knew their child.

They offer stimulating and educational activities

Services that provide a stimulating and rewarding experience for the children ensure that the children benefit as much from the short break as their parents. If parents know their child is going to have fun, they are also better able to relax and enjoy themselves.

Getting a break at the same time as my child is having great fun is obviously the best combination, giving the rest of her family a far more relaxed time … The days that Lucy is invited to the Centre are unequivocally fun for all of us. Lucy is thoroughly enjoying herself, and therefore we feel no guilt at doing exactly the same … It's not the longest session in the world, but Lucy loves it and is really happy and worn out at the end of the day, and her siblings are able to tell her about the fun that they have had and share their tales of their day. What more could you ask for?

Parent

Good practice example

The Hamlet Centre Trust has a toy library with specialist toys and activities for disabled children. There is also a sensory room and a playroom where children on the play schemes can play with the toys. The library is unusual in being staffed five days a week. The library workers provide advice to parents and demonstrate suitable toys and equipment. They also keep up to date with new developments, including sensory/switch toys. Parents can make suggestions for new purchases within the funds available.

They are family-centred

Care plans and activities are developed with input from the families using the services. This ensures the support they receive will meet their particular needs. Initially this requires carrying out a detailed needs assessment.

We carry out a detailed assessment of each family to see how best services can be provided.  It’s a very well developed tool and allows us to provide more personalised services.

Staff member, Mid Essex PCT

Each child is also offered as much choice and control as possible over how they spend their time and who they spend their time with.

We have arranged for two friends to have a short break together, explaining to them that it is their sleepover. This idea greatly appealed to the two girls who are both wheelchair users. The families could not have done this as their houses cannot accommodate two chairs.

Staff member, Nascot Lawn

They support parents

Staff recognise that parents can find it difficult to leave their child and so provide the necessary reassurance.

Parents are positively encouraged to go out and to have good time; they know the nurses can take charge.

Staff member, South East Essex PCT

I went to the park without my child for the first time and I was really worried, but the staff understood that.

Parent

The staff give me confidence that I can leave my child with them.  This takes time to achieve.

Parent

Through receipt of specialist advice during the short breaks, parents are also encouraged to provide more advanced care at home.

In all our services we want to provide a stimulating educational environment for the child ... We work on positioning, gross and fine motor activities, communication and play. We help parents to stimulate their child, play appropriately with them and to continue doing this at home. This gives parents increased confidence and higher morale.

Staff member, Mid Essex PCT

We’ve had no stays in the hospital since having this support as we feel better equipped at home now – no rushing off to the hospital in the middle of the night.

Parent

It has also given us the confidence to spend a night or two away from home despite having to use specialist equipment.

Parent

They are distinct from healthcare services

Disabled children and their families want to avoid feeling like they are ‘going into hospital’ while on a short break. As far as possible they want to retain a sense of normal life. However, at the same time many children do need specialist nursing care. Some organisations have managed to ‘de-medicalise’ their services, for example by creating new types of post.

While some care is still provided by nurses, we have also created a hybrid post by training up care assistants (NVQ level 3 and 4) to provide the complex care that the children need. As well as being cost effective, families like it. The staff relate well to all the family and quickly develop a rapport with them … perhaps they seem less ‘professional’ and ‘medical’.

Staff member, SHSSB

The nursery nurse can administer medication and do the feeding, they have the knowledge to do all the jobs that I do, it’s very rare to find a care package that does that.

Parent