We inspected this service on 6 June 2017.

Helen and Douglas House is a hospice charity based in Oxford providing palliative, respite, end of life and bereavement care to life limited children, young adults and their families. Helen House can accommodate up to eight children and Douglas House up to seven young adults. At the time of our inspection there were four children in Helen House and three young adults in Douglas House.

The service provides complete care including counselling and bereavement support for children, young adults and their families. The hospice had a multi-professional team consisting of medical and nursing staff, spiritual care, family support workers and therapists. The hospice was also supported by volunteers.

There was a registered manager in post. A registered manager is a person who has registered with the Care Quality Commission 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 worked closely with the director of clinical services and a deputy manager.

At the last inspection on 6 December 2016, the inspection was prompted in part by a notification of a significant incident. On that focused inspection the service was rated inadequate in safe and requiring improvement in well led. Two breaches of the Health and Social Care Act 2008 (Regulated Activities) 2014 were identified. Following the inspection, we received regular action plans which set out what actions were being taken to ensure children and young adults were safe.

We undertook this inspection on 6 June 2017 in line with our inspection guidance to see if improvements had been made. At this inspection we found considerable improvements in the service. We saw that action had been taken to improve children's and young adults' safety and the provider’s quality assurance systems were effective.

Children and young adults had a range of individualised risk assessments in place to keep them safe and to help them maintain their independence. Where risks to children and young adults had been identified, risk assessments were in place and action had been taken to manage the risks. Staff were aware of children's and young adults' needs and followed guidance to keep them safe.

Children and young adults received care that was personalised to meet their needs. Care plans were current and reflected changes in care.

The provider had effective quality assurance systems in place which identified areas of improvement and allowed learning across the board.

Children and young adults who were supported by the service felt safe. Staff had a clear understanding on how to safeguard them and protect their health and well-being. Children and young adults received their medicines as prescribed.

There were enough suitably qualified and experienced staff to meet children’s and young adults’ needs. The service had robust recruitment procedures and conducted background checks to ensure staff were suitable for their roles.

Staff received adequate training and support to carry out their roles effectively. Children and young adults felt supported by competent staff that benefitted from regular supervision (one to one meetings with their line manager) to help them meet the needs of the children and young adults they cared for. Nurses were supported through the revalidation process.

Children’s and young adults’ nutritional needs were met. They were given choices and were supported to have their meals when they needed them. Staff treated children and young adults with kindness, compassion and respect and promoted their independence and right to privacy.

Children and young adults were supported to maintain their health and were referred for specialist advice as required. Staff knew how to support children, young adults and their families through

This inspection took place on 6 December and was unannounced.

Helen and Douglas House is a hospice charity based in Oxford providing palliative, respite, end of life and bereavement care to life limited children, young adults and their families. Helen House can accommodate up to eight children and Douglas House up to seven young adults. At the time of our inspection there were four children in Helen House and two young adults in Douglas House.

This inspection was prompted in part by a notification of a significant incident. The information shared with CQC about the incident indicated potential concerns about the management of risks in relation to medical equipment. This inspection examined those risks and reported on the findings in the safe and well led domains.

There was a registered manager in post. A registered manager is a person who has registered with the Care Quality Commission 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 worked closely with the director of clinical services and a deputy manager.

People who required specific medical support around activities such as breathing, eating and elimination did not always have the necessary risk assessments in place to keep them safe. Where they were in place they were not always completed. Risk assessments for people suffering from seizures were not always completed.

People’s care plans were not always current and did not always reflect changes in care.

Staff received training and support. However, the provider did not have an overview of the training matrix therefore it was difficult to determine whether staff were appropriately trained to carry out their roles.

The provider had quality assurance systems in place. However, these were not always effective. The provider had been reactive following the incident and made changes to minimise risks posed for people using breathing equipment. However learning had not been applied more widely and the provider had not identified, assessed and mitigated potential risks associated with other types of associated medical equipment. The provider did not have overview of staff training and there was lack of leadership around ensuring staff were competent in their roles.

Risks in relation to ventilation and breathing circuits had been identified following the incident and there were risk management plans to support staff on how to minimise such risks.

People who were supported by the service felt safe. Staff had a clear understanding on how to safeguard people and protect their health and well-being. Safeguarding was well embedded into everyday practice.

The registered manager informed us of all notifiable incidents. Accidents or incidents relating to people were documented, thoroughly investigated and actions were followed through to reduce the risk of further incidents occurring.

Transitioning of care with other services was effective and allowed consistency on care. Families were involved in comprehensive handover processes to ensure staff captured all the information they needed.

Leadership within the service had a clear structure which aided in the smooth running of the hospice.

We identified two breaches of the Health and Social Care Act 2008 (Regulated Activity) Regulation 2014. You can see what action we told the provider to take at the back of the full version of this report.

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.