Helen and Douglas House Hospice for Children and young adults is a hospice charity based in Oxford providing palliative, respite, end of life and bereavement care to life limited children and young adults, and their families. Helen House was the first children’s hospice opening in November 1982. It is registered to accommodate children from birth up to 18 years of age. Douglas House is adjacent to Helen House where young adults from 16 years of age up to 35 who have life shortening conditions can stay for either respite care or symptom management.
Helen House can accommodate up to eight children and Douglas House seven young adults.
Two or three of the rooms cater for emergency admissions, with the remaining five or six rooms available for symptom management, step discharge from hospital or residential short breaks. At Helen House provision can be made for parents/carers to sleep in the same room as their child and four of the bedrooms have interconnecting doors, making a double room for use of a family with more than one child who has a progressive life-shortening condition. Families may stay in one of Helen Houses’ four family flats.
Douglas House has seven single rooms, two of which are normally available for emergency admissions. The remaining five rooms are available for residential short breaks. Family members and /or carers accompanying a young adult may stay in one of three family suites.
The Care Teams are responsible for all the care of the children, young adults and families. The members of the team have varied skills and professional backgrounds including Registered Nurses, in different areas of expertise. Consultants, Care Team Members, Nursery Nurses, Play specialists, and Activities Co-ordinator, Chaplain, Music Therapist, Aromatherapists, Physiotherapists, Occupational Therapist and Social Workers. They work as a team, sharing their skills and carrying out all procedures normally achieved at home by the parents/carers.
The inspection was carried out on 3 and 4 December 2015 by two inspectors and one palliative nurse specialist. It was an unannounced inspection.
There was a manager in post who was registered with the Care Quality Commission (CQC). A registered manager is a person who has registered with the 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 was supported by a team which included a Board of Trustees who ensure that Helen and Douglas House was run in accordance with its legal, moral and ethical obligations.
Staff were trained in how to protect children and young adults from abuse and harm. They knew how to recognise signs of abuse and how to raise an alert if they had any concerns. Risk assessments were centred on the needs of the individual. Each risk assessment included clear measures to reduce identified risks and guidance for staff to follow or make sure children and young adults were protected from harm. Accidents and incidents were recorded and monitored to identify how the risks of recurrence could be reduced.
There was sufficient staff on duty to meet children and young adults needs. Staffing levels were calculated according to people’s changing needs. Robust recruitment checks were carried out prior to staff working in the houses. Staff had received essential training and attended refresher courses when necessary. All members of staff received regular one to one supervision sessions and had received yearly appraisals to promote a culture of learning and to encourage staff to discuss their learning needs and how to address these
Medicines were administered in line with current policy and procedure and a pharmacist visited the service on a regular basis to ensure correct stock control was maintained and medicine charts were appropriately completed.
Before young adults received any care or treatment they were asked for their consent and the provider acted in accordance with their wishes. In the case of children consent was given by a parent. We saw staff interacting with children and young adults in an appropriate manner and respecting their privacy by waiting after knocking on room doors before entering.
The service was aware of their responsibilities in regard to the Deprivation of Liberty Safeguards (DoLS). These safeguards aim to offer protection for anyone using services from being inappropriately deprived of their liberty. These safeguards are used when there is no other alternative way of supporting someone safely. If young adults had been assessed as not having capacity any decisions made would follow the Mental Capacity Act 2005 (MCA).
The staff provided meals that were sufficient in quantity and met everyone's needs and choices. Staff were aware of dietary restrictions and preferences.
One family member we spoke with commented, “The staff are amazing, you walk in and it’s a happy place.” The family member went on to say that now that her child had a syringe driver in place this was where they wanted to be. They also commented that every time they came in, their relative’s care plan had been updated and that a specific care plan had been introduced that addressed how end of life care was to be managed.
Bereaved relatives were able to stay for as long as possible after their child's death, often up to five days and if possible up to their funeral. A bereavement support group contacted relatives and encouraged them to come back and visit the hospice to have a chat/tea. There is whole family support including support for siblings. Helen House had a cold bedroom used if parents wish to say goodbye to their deceased child in a peaceful setting. This room could also be used by families who had lost a child in a hospital setting.
Young adults were involved in activities. Douglas House had outings and activities that were suitable for the age range of young adults whilst Helen House had play specialists who provided activities for young children.
The registered manager was open and transparent in their approach. They held a vision for the service that included, to be the regional centre of expertise and lead provider of age-appropriate core and specialist palliative care, complex symptom management, supportive care and enablement for children and young adults with palliative care needs across the Thames Valley, working in partnership with patients, families/carers and the professional services around them, and with supporters, funders and commissioners.
The service’s priority was to ‘keep the focus’ and any challenges that had been identified were dealt with as soon as possible. Keeping the Focus is a document that the organisation had introduced to reinforce the services aims and priorities. Helen and Douglas House acknowledged the importance of quality governance to support the effective delivery of care and improvements to services. Actions during 2014-15 included items identified in the previous year’s quality audits and in turn, informed priorities for the forthcoming year. One area identified was the implementation of a new patient notes system. This has been fully implemented and was running well.