Milton Children’s Hospice is registered to provide care and treatment to children and young people, aged between 0 and 19 years, who have a life-limiting illness or condition. The hospice offers a wide range of services, which are delivered in the way that meets the needs of each young person and their family and in the place that suits the young person and their family best. This can be in their own home, in hospital or at the hospice in Milton.

Services are offered from diagnosis to end of life and throughout bereavement and include the young person’s extended family, such as grandparents. Receiving care from East Anglia’s Childrens Hospices (EACH) does not mean that the child’s death is imminent. Many of the children and young people who use the service live long and active lives but need additional care and support. The provider’s website states that the service is available 365 days a year.

Milton Children’s Hospice building is an old rectory set in its own peaceful grounds next to the church on the outskirts of the village of Milton. The original house has been converted and extended a number of times over the years. The house offers six single bedrooms all of which have direct access to bathroom facilities. There is also a single bedroom suitable for a baby. There are shared areas for relaxation, play and meals as well as therapy rooms, a hydrotherapy pool and an education centre. There are facilities on site for families to stay and there are a number of offices, a library and meeting rooms. At the time of the inspection the service had adjusted the number of young people staying for respite to four to ensure that the service provided was safe and of high quality.

The provider, EACH, runs three hospices in East Anglia. The three hospices work very closely together, sharing knowledge and expertise as well as sharing some staff teams, such as the Symptom Management Team (previously known as the True Colours team) and the Well Being Team.

This comprehensive inspection took place on 16 and 25 February 2016 and was unannounced. On each day of the inspection there were two young people staying for a short break.

There was a registered manager in place. A registered manager is a person who has registered with the Care Quality Commission (CQC) to manage the service. Like registered providers, they are ‘registered persons’. Registered persons have legal responsibility for meeting the requirements in the Health and Social Care Act 2008 and associated Regulations about how the service is run. The registered manager had been in post for 10 years.

The young people we met were happy at the hospice and they were relaxed and comfortable with the staff. The service had received numerous compliments about the care and support provided to young people and their families. Parents told us how much the care and support provided by the hospice staff meant to them, their child and their extended family. They were effusive in their praise of the staff. The staff team looked for solutions and used creative approaches to support each child and their family.

The service had a very strong person-centred culture. Everything was based on the needs, wishes and goals of the individual child and their family and how those needs, wishes and goals could be recognised, supported and met. The staff team strived to give each child the best life, and if and when it came to it, the best death they could have. Staff supported families before, during and after a bereavement for as long as the family wanted support.

Outstanding care was provided by compassionate and enabling staff who treated the young people well, respected their privacy and dignity and encouraged them to be as independent as possible. We saw that the young people and the staff supporting them had warm, caring relationships and there was a lot of laughter and fun. Staff were creative and used a wide range of methods to communicate in the best possible way with each young person. Staf

During our inspection we spoke with five families of children who used the hospice. All of the families spoke very highly of the service that they received. One said, “We have no concerns at all, we have every confidence in the staff.” Another said, “We have 100% confidence in the hospice, I have never had a concern in all the years we have been coming here.”

The hospice had systems in place to ensure that assessments of a child’s, and their families, needs were carried out. The care plans contained very detailed guidance to staff about how to meet the child’s needs. The care records were regularly updated and the views of the child, and their family, were central to the way in which care was provided.

We spoke with six members of staff from a range of roles within the staff team. They all confirmed that they received good support and appropriate training to enable them to carry out their roles effectively.

Parents and families we spoke with viewed the care and services provided by the hospice as being of very high quality. One parent commented, “The service has been heaven sent for us, we would not have survived without the support. The staff are really there for you and I can pick up the phone and cry or shout”. Another stated, “Knowing my child is safe there and that he’s getting the same level of care I give him is the best thing”. Another parent reported, “They supported our two daughters both at home and in the hospice itself and the care was fantastic”. One parent was particularly impressed that the hospice staff even provided care for her child at the hospital as she was too ill to be moved to the hospice itself. One parent, who received home care for her daughter told us, “They always bring the minibus to take my daughter out to the shops or the park. She gets really excited when they come”.

People told us they particularly valued the ‘siblings club’ and one relative stated, ‘The kids love it, they make children feel so welcome and special and it’s a good chance for them to meet other children”. Another parent stated, “Staff even helped my eldest child cope and came to the house and did art therapy with him”. Another parent spoke highly of the True Colours Team (a specialist symptom management advice service) telling us, “I’ve even ring them up from the hospital so they can explain things to me and reassure me I’m not just being neurotic”.

A lead nurse in the local continuing care team told us, “I’m impressed by the range of services on offer and the fact that staff constantly look at ways to improve the service. For example, the family support team realised that not many fathers attended support groups so they started up a specific ‘dads group’ and also a teenage boys group. They are good at moulding the service round local need’. One local GP we spoke with described the service as “Amazingly good, the clinical governance is good and they know the children backwards and all the associated family dynamics”.

However some people reported that respite stays could be cancelled at very short notice and, although understanding of the reason why, told us it had quite a big impact on the whole family. One parent commented, “We don’t dare book a holiday in case the respite’s cancelled “; another parent told us, “Sometimes it’s hard explaining to (my daughter) why she isn’t going and we’ve lost money when we’ve booked tickets for the theatre when she’s in respite”. Two parents felt that the respite service should return to providing support seven days a week as it had done previously. Another parent felt that the allocations of services were sometimes quite inflexible stating, “Allocations always seem to be on their terms and they dictate the dates. You get a letter saying that she’s booked in on these dates and if you can’t make them you’re rarely offered an alternative”. (The provider is aware of these shortfalls and has recently allocated money for a three year development porgramme to address them.)

As part of this inspection we spoke with two young people who used the service and five relatives for their views and experiencers. We also spoke with the registered manager, two care managers, the young person lead and a carer. We looked at service information and care plan records for three young people who were in the process of transitioning into adult services.

Relatives told us they had received detailed information advising them of the services and support available to them. Comments included, “We received a huge amount of information.”

Young people who used the service told us they were involved in discussions and decision’s about the care they received. Comments included, “My independence is important to me, I feel this is recognised and respected.”

We saw the provider worked in a multi-disciplinary manner both internally due to the health and social care professionals employed, and externally with professionals who were involved in the care of children and young people who used the service.

Relatives told us they found the service provided an invaluable support to them and that they felt their relative was well cared for in a safe and protected environment. Comments included, “I don’t have any worries about leaving my son in the care of the staff.”

We found staff employed at the service were well supported and received a comprehensive induction, and on-going training in the needs of the children and young people they cared for.