Helen and Douglas House

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• Overview
• Kindness, compassion and dignity
• Treating people as individuals
• Independence, choice and control
• Responding to people’s immediate needs
• Workforce wellbeing and enablement

At our last assessment we rated this key question as outstanding. At this assessment the rating has remained outstanding. Staff consistently went above and beyond to make a real and lasting difference to children and their families. They showed exceptional dedication in understanding and responding to each child’s individual needs, delivering care with kindness, warmth and genuine passion. We saw a deeply caring culture, with staff fully committed to upholding dignity, respect and understanding in every interaction. Strong, trusting relationships were built with children and their families and staff did everything within their power to help fulfil children’s final wishes, creating meaningful moments at the most important times.

This service scored 95 (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 4. The evidence showed an exceptional standard. Staff went above and beyond to treat children and families with kindness, empathy and compassion. Staff built genuine relationships and respected privacy and dignity.

We found a deeply embedded culture of care, with staff consistently telling us that no request was considered too small to attend to or too large to organise. Staff advised that, to date, there had never been a request they were unable to fulfil. We were provided with numerous examples of the service supporting end-of-life wishes, ranging from enabling a child to sleep under the stars in a purpose-built igloo accommodating medical equipment and family beds, to arranging animal park visits within the service’s grounds.

Staff also demonstrated strong support for parents and families. One parent told us that, for their birthday, staff organised the loan of a soft-top Mercedes and arranged an afternoon tea for them and their partner.

We inspected the service in early November and observed that one of the outbuildings had been transformed into a Santa’s Grotto. Staff explained that they were organising early Christmas celebrations for children and families who were not expected to live until 25 December. Following feedback, the service introduced live animals, such as penguins and reindeer to their family Christmas party.

When we spoke with parents, they were overwhelmingly positive about the service. Figures from the most recent Friends and Family Test showed the percentage of friends and family who recommend the service was in the high 90’s. Parents stated they implicitly trusted the staff to look after their children, and the service gave them respite and an ability to recharge. Comments included “I know that when they are here, they are 100% safe and are loved by everyone”, “There is such a feeling of love, the staff wrap you up and it can’t be underestimated. It is a loving family home from home,” “I walk in as my daughter’s mum and I walk out as me”.

We also spoke with parents who had a child pass away at the service, they said “We knew it was coming to the end. (Our daughter) wanted to stay at the hospice, we were able to get the flat upstairs, and it meant we could be together. (She) said it was like being on holiday. She had a lovely bath, we played music, ordered a takeaway and had the dogs with us”. Another stated “Being allowed to stay for 5 days after they died meant we could process what had happened. I was able to finish reading the books we had been reading. All of us could be together. Staff still looked after her after she died. They would say, ‘Good morning, let me tuck you up, check your pump’. She was still their patient, and they made sure that she and we were OK”.

We scored the service as 4. The evidence showed an exceptional standard. The service ensured care and treatment was tailored in order to meet needs and preferences and treat children as individuals. Staff took account of culture, unique backgrounds and protected characteristics.

Staff ensured activities were personalised, supporting each child to engage in experiences that were meaningful to them. We were told of one child who had wanted to be an audience member on the television programme The Masked Singer but was too unwell to attend. In response, staff organised an alternative experience in which they disguised themselves and performed songs, allowing the children to guess who was singing.

We observed a water-based sensory session in which each child was supported by both a play worker and a nurse. Throughout the session, staff ensured children were positioned comfortably and optimally. Children were offered choices about whether they wished to listen to music and, if so, which songs they preferred, as well as the type of lighting they wanted. Staff encouraged children to blow bubbles and experience the sensation of the bubbles on their faces and skin. At the end of the session, staff checked whether the children had enjoyed the activity, offered the option to extend it and recorded which elements they particularly liked to inform and tailor future sessions.

When treatments or interventions were required, staff promoted children’s autonomy by involving them in decisions about where and how these took place. During the sensory session, one child developed increased coughing, and staff identified the need for a medical assessment. They asked the child where they would like this to happen and offered several practical options.

Children were supported to personalise their bedrooms. We viewed all bedrooms and observed that children had individual posters, toys and personalised bed linen. Each room contained an information board displaying the child’s ‘All About Me’ poster, which included their preferred name, any allergies and their likes and dislikes. These profiles were highly detailed and went beyond general preferences. For example, rather than stating that a child liked pop music, they listed specific bands and artists, as well as individual preferences such as how the child liked their food prepared. We observed one profile that noted the child became distressed if staff used the word “mum”, ensuring staff were aware and avoided using this term.

We scored the service as 4. The evidence showed an exceptional standard. Staff did everything possible to ensure children and families maintained as much choice and autonomy over their own care, treatment and wellbeing.

We were given numerous examples of how staff supported children’s choice and control over their own treatment and care.

Although the service had an established activities programme developed in partnership with children and families, staff regularly adapted this to reflect individual preferences and requests. For example, following a sensory session we observed, one child expressed a wish to take part in artwork. Staff immediately supported this by escorting the child to the dedicated arts and crafts area. Although the child was due to attend a therapy session, staff rearranged timings to prioritise the child’s expressed wishes.

One family told us that, as their child’s condition deteriorated, they wished to spend time together at home before returning to the hospice for end-of-life care. In response, the service arranged for the community team to visit the family home to ensure the environment was suitable and that all family members were supported. Staff also provided symptom management to enable the family to create meaningful and lasting memories together at home.

Another child was receiving end of life care at the time of the remembrance service, he was enjoying the songs could not join the event. To ensure he could still take part, staff arranged for the service choir to hold a separate remembrance service in the child’s room.

Teenagers using the service were actively encouraged to participate in decision-making wherever possible. The service organised dedicated Network Saturdays designed to help teenagers make friends with others in their age group with similar comorbidities. The service supported a younger child to attend these sessions even though they were designed for older children, as there were other children attending with the same rare condition. Staff also organised teen weekends, during which young people could eat pizza, watch films stay overnight. Feedback from these events was overwhelmingly positive. Teenage patients also told us they particularly valued outings that involved everyday activities, such as travelling into town using public transport, as this helped build confidence and allowed them to feel more “normal”.

Children and young people were supported to make choices about where they wished to spend their final moments. The bereavement suite, located at the end of the clinical corridor, provided private outdoor access and could be adapted to suit individual family circumstances. Staff explained how the room could be personalised through decoration, lighting and the use of Bluetooth speakers.

Children who co-slept with their parents and wished to die with a parent next to them, could access another separate suite which was large enough to accommodate a double bed, ensuring privacy and comfort. We were also told that some teenagers requested to pass away in a double bed so that their partners could remain beside them.

The service had planned a day trip to London. We observed the extensive planning undertaken to support this, including detailed logistical arrangements for travel into central London, individual risk assessments and the provision of personalised care passports for each child. Staff had also arranged a base location where children could rest and access facilities, completed detailed care planning, notified the local hospital of the group’s presence and mapped the fastest routes to emergency services if required.

We scored the service as 4. The evidence showed an exceptional standard. Staff were very aware of the needs of children and families and acted to minimize discomfort, concern and distress.

During the inspection process we saw numerous examples of staff going above and beyond to support children and families.

Staff tailored each end-of-life experience to meet the individual needs of children and their families, offering support not only during the active end-of-life phase but also by helping families create lasting memories. For example, staff created personalised memory boxes that could be adapted to reflect a family’s cultural or religious beliefs. A Muslim memory box included a prayer book, while a Jewish memory box contained a candle. The service also offered the option to create keepsake jewellery using colostrum or breast milk.

Staff created handprint moulds and were reviewing a range of clay options to ensure handprints could also be provided for babies born prematurely. The perinatal team supported women and families in creating meaningful memories throughout pregnancy. This included access to art sessions where moulds were made of the pregnant abdomen, organised family photo sessions and transforming recordings of a baby’s heartbeat into keepsake items such as teddy bears. Women expecting a ‘rainbow’ baby (a child born following miscarriage, stillbirth, neonatal, or child death) were also able to access counselling support during their pregnancy.

The hospice’s volunteer service won a Hospice UK award for their work making miniature blankets and teddies for premature and very small babies. Some blankets remain with the babies and where this occurs, families are also offered a matching teddy so they can keep a keepsake that mirrors the blanket left with their child.

At the time of assessment, the service offered a range of bereavement and counselling support, including one-to-one and family sessions, which families could access for as long as they felt they needed. The service also held an annual remembrance event focused on children who had died in the previous year; however, this was open to anyone whose family member had received care from the service.

Managers had recently undertaken a survey to understand families’ views on what effective bereavement support looked like. Findings showed that families did not want solely traditional counselling sessions but also valued opportunities to engage in meaningful activities and build relationships with others who had experienced the loss of a child. One parent told us, “It’s comforting knowing you’re not the only one in this club you never wanted to be a member of.” In response, the service introduced walking groups and yoga sessions.

The service also identified that women engaged with bereavement activities more frequently than men. To address this, managers introduced a ‘Keepsake’ initiative in which whole families worked with local singers and songwriters to create a song in memory of their child. At the time of the assessment, 20 families had taken part, and the service hosted a family concert with afternoon tea. Feedback from the event was positive and demonstrated increased engagement from men.

We scored the service as 3. The evidence showed a good standard. Leaders actively cared about, listened to and promoted the wellbeing of their staff.

Staff now had access to a calm, supportive staff room with wellbeing resources and relaxation activities. A staff appreciation app enabled real-time recognition, which was well received.

Staff described a caring, supportive culture and spoke extremely highly of the new senior leadership team, who provided personalised support after challenging events and were visible and engaged.

Team relationships were strengthened through social activities, and managers actively used staff feedback to drive improvements, including collaboratively redesigning shift patterns to promote inclusivity and teamwork.