Helen and Douglas House

On this page

• Overview
• Assessing needs
• Delivering evidence-based care and treatment
• How staff, teams and services work together
• Supporting people to live healthier lives
• Monitoring and improving outcomes
• Consent to care and treatment

At our last assessment we rated this key question as good. At this assessment the rating has remained the same. Leaders ensured care was delivered in line with current guidance and actively contributed to the development of guidance and demonstrating innovative, forward-thinking approaches. Staff consistently assessed and adapted care to reflect the individual preferences and evolving needs of children and families. Care planning was dynamic and responsive, ensuring personalised support at every stage. We also observed a strong culture of multidisciplinary collaboration. Teams worked seamlessly across professional boundaries, demonstrating shared accountability and a collective commitment to achieving the best possible outcomes for children and families.

This service scored 83 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

We scored the service as 3. The evidence showed a good standard. The service made sure people’s care and treatment was effective by assessing and reviewing their health, care, wellbeing and communication needs with them.

We observed staff using a range of communication methods to support children to express choice and participate in their care. For example, staff used communication boards to offer children two clear options, supporting decision-making in a way that was accessible and meaningful. Throughout care interactions, staff explained what they were going to do, used reassuring language and gave countdown prompts before interventions. This approach reduced anxiety and promoted trust.

Staff were trained in Makaton (a language programme that usessigns, symbols and speechto help people with communication) and had access to communication boards and alternative communication tools. A Makaton training day had been delivered to strengthen staff confidence and consistency in approach. The service was also in the process of replacing its eye-gaze communication unit to ensure children with complex communication needs had access to up-to-date assistive technology.

We observed safe moving and handling practices, with staff demonstrating competence and maintaining effective communication throughout the process.

Nutritional care was delivered safely in line with national guidelines and care plans, with appropriate specialist support and input from dieticians who supported staff understanding of feeding methods.

Care processes were well organised, including clear management of belongings. Care plans covered clinical and physical and educational needs well, though leaders identified scope to better document spiritual needs.

We scored the service as 3. The evidence showed a good standard. The service planned and delivered care and treatment in line with legislation, national standards and current evidence-based guidance.

The service was compliant with all relevant National Institute for Health and Care Excellence (NICE) guidelines and care pathways. Policies were current, evidence-based and aligned with national standards and legislation. We reviewed 10 policies and found they were in date and appropriately referenced national guidance.

A comprehensive audit programme covered both clinical and non-clinical areas. The annual audit schedule was detailed and up to date. Each audit generated a formal action plan, and managers maintained clear oversight to ensure actions were implemented, reviewed and re-tested to confirm improvement.

All medical staff held roles outside the organisation, some at national level. Leaders demonstrated how knowledge and insight gained through these external roles was brought back into the service to strengthen clinical practice and ensure care remained aligned with the latest evidence and national developments.

We scored the service as 4. The evidence showed an exceptional standard. The service demonstrated excellent partnership working across teams, organisations and geographical boundaries to ensure children and families received seamless, holistic support.

We found the service consistently adopted a holistic, team-based approach, thinking not only about the child in their care but how best to support the whole family. Staff demonstrated a proactive and compassionate mindset, recognising when siblings were struggling or when families required financial or emotional support. Nothing was considered too small, and teams actively sought meaningful ways to provide help and reassurance.

We observed a multidisciplinary team (MDT) meeting that exemplified outstanding practice. There was strong collaboration between therapy, medical, nursing and community teams. We noted genuine co-production and shared decision-making, with discussions extending beyond clinical needs to consider the wider impact on the family. The meeting was characterised by mutual professional respect, curiosity, and a clear sense of collective accountability.

There were multiple examples of effective multidisciplinary working. Medical and nursing teams jointly reviewed the use of subcutaneous syringe drivers, with a commitment to evaluate outcomes to inform future practice. In another instance, following an adverse reaction to a medical patch, staff worked together to review both the clinical evidence and practical considerations of subcutaneous and transdermal options. This reflected thoughtful, reflective practice that considered both the individual child and implications for the wider service.

Therapy and outreach services were fully integrated within the MDT model. Physiotherapy provision was well coordinated and embedded into care planning, with therapists actively involved in weekly handovers and reviews of upcoming admissions. This ensured that children with complex mobility or pain management needs received timely, proactive input from the outset.

The outreach team provided a responsive and well-organised service, maintaining a dedicated community caseload that included children receiving end-of-life care and symptom management at home. They worked closely with schools, GPs, and community children’s nurses to identify and meet educational needs, strengthening palliative care knowledge across the wider system. Effective partnership working extended to neighbouring hospices and acute trusts, with shared caseloads supporting continuity of care and reducing duplication.

The service demonstrated strong integration with acute services. Regular engagement with the local acute hospital’s children’s oncology unit helped to build relationships, enhance mutual understanding, and support earlier, more coordinated care planning.

Leaders also showed innovation in improving accessibility. In partnership with a charity, the service established its first community hub in Aylesbury, recognising the barriers some families faced in travelling to Oxford. The hub was actively promoted within the community, including through local schools, helping to extend the reach of the service and improve access to support.

We scored the service as 3. The evidence showed a good standard. The service supported children and families to manage their wellbeing and to live healthier lives.

Staff demonstrated a clear understanding of the importance of supporting both the physical and mental wellbeing of children, young people and their families. Support was provided holistically, with staff working to meet the needs of all family members.

Staff recognised the impact that having a family member with a life-limiting illness could have on siblings, particularly where parental attention was focused on the unwell child. Siblings were welcomed to take part in activities and had access to all areas of the site. They were also offered tailored support, including one-to-one sessions that could be flexibly arranged at home, in school, or onsite. Group sessions were organised according to age and included a range of activities. In addition, the service arranged residential camps and day trips, which staff told us were well received and contributed positively to siblings’ mental health and wellbeing.

The service also provided parents with information and signposting to external charities and organisations to support the financial impact of caring for a child with a serious illness. This included advice and support with energy and fuel costs, grant applications, access to food support schemes and mobility programmes.

We scored the service as 4. The evidence showed an exceptional standard. The service had comprehensive and well-established systems in place to ensure care and treatment were consistently delivered in line with evidence-based standards.

Leaders empowered staff to improve outcomes for patients and routinely sought their feedback to support continuous improvement. A wide range of local audits and external benchmarking activity was used to assess the effectiveness and quality of care, with findings used to drive ongoing development.

The service actively sought and valued feedback from families, carers, professionals, and other stakeholders when monitoring both individual and service-level outcomes. For example, feedback from parents and carers was routinely collected and used to inform service evaluation and quality improvement initiatives.

Leaders demonstrated a strong commitment to inclusivity by actively engaging with a range of faith groups to deepen understanding of diverse cultural needs and ensure these were reflected in end-of-life and bereavement care.

Multidisciplinary team (MDT) working was highly effective in maintaining up-to-date, individualised care plans that supported patient safety and high-quality outcomes. We reviewed detailed care plans covering behaviour, epilepsy, and symptom management, all of which clearly set out expected outcomes and were regularly reviewed and updated in response to changing needs.

Staff consistently used audits, clinical pathways, and MDT meetings to sustain high standards of care. MDT meeting minutes demonstrated clear actions, defined objectives, and structured follow-up, ensuring continuous improvement in care quality and outcomes for babies, children, and young people. A broad range of audits was undertaken, including care plan audits, community equipment audits, Advance Care Planning audits, infection prevention and control (IPC), moving and handling, and medicines management, all of which demonstrated consistently high levels of compliance.

Leaders used outcome data, including preferred place of death, to continually shape and improve service delivery. Data from the time of inspection showed all patients died at their preferred place of death. The service demonstrated a clear understanding of strengthening end‑of‑life care and ensuring there was strong alignment between Advance Care Planning and care delivered in line with individual wishes. Advance Care Planning was embedded at the centre of care and treatment discussions. Children and families were involved in timely, sensitive conversations, and records of wishes and preferences were comprehensive, routinely reviewed, and updated to reflect any changes. This ensured care remained highly personalised and consistently respected the wishes of each child.

We scored the service as 3. The evidence showed a good standard. The service told children and their families about their rights around consent and respected these when delivering person-centred care and treatment.

Staff understood and applied the Mental Capacity Act 2005, supporting individuals to make decisions where possible and acting in their best interests when capacity was lacking. Capacity assessments were completed by competent staff and reflected individuals’ preferences.

Staff also demonstrated good understanding of consent, including recording processes and the use of Gillick competence to support children under 16 to make their own decisions where appropriate.

Staff consistently respected children and young people’s rights in relation to consent, ensuring that individuals were fully informed and actively involved in decisions about their care. Staff supported children and families to make choices that reflected their values, preferences and individual needs.

The consent policy was aligned with national guidance. It clearly set out the different types of consent and provided explicit guidance on who could provide consent for those under and over the age of 16, including in situations where capacity may be lacking.

Staff demonstrated understanding of their role and responsibilities and consistently applied these principles in practice. We observed staff seeking consent appropriately and sensitively during care delivery. Consent was clearly and consistently documented within care records.

Staff had a clear understanding of the importance of timely and appropriate conversations about decisions regarding Do Not Attempt Cardiopulmonary Resuscitation (DNACPR). They were confident in knowing when these discussions should take place and how to approach them sensitively. At the time of inspection, DNACPR forms were completed in accordance with best practice where appropriate.

Staff demonstrated a clear understanding of best interest decision-making. Where children or young people lacked capacity, families were actively involved wherever possible to ensure decisions were made in the child’s best interests and reflected family values and preferences.