NCSC Recommendations to the Department
of Health (1 May 2003) regarding amendments to the regulation
of Children and Adults Hospice provision
Regulation 36 of the Private and Voluntary Healthcare
Regulations states that "where a child is treated in an independent
hospital he is treated in accommodation which is separate from
accommodation in which adult patients are treated."
This absolute legal requirement for total separation
between accommodation of those under 18 and those over 18 has
been raised by children's hospice providers as a problem for many
hospices that wish to continue much needed provision for young
people beyond the age of 18, and for individual young people whose
care and support from their hospice may be disrupted on reaching
the age of 18 if the Regulation is strictly applied.
The problem is particularly acute for young
people with conditions such as muscular dystrophy, whose care
in a children's hospice is increasingly needed to continue beyond
the age of 18 and for whom there is rarely a similar and suitable
local respite, palliative and terminal care facility.
A more flexible solution to the need to separate
children's and adult services in establishments that span the
age of 18 has been already been adopted in the Care Homes Regulations,
where the requirement is that the provision for care, treatment
and supervision of children is "so far as it is practicable
to do so" made separately from other service users, but with
the specific proviso in the Regulations that this shall not prevent
provision jointly for children and other service users whose age
does not significantly differ from those children.
The intention of change in relation to children's
hospices is to enable those already supported by a hospice under
the age of 18 to continue that support after they reach 18, not
to enable new admissions of adults to children's hospices.
The Commission proposes that the Private and
Voluntary Healthcare Regulations relating to Children's Hospices
should be amended to require the following:
(i) That a children's hospice may accommodate
and provide treatment for young adults over the age of 18 who
have already received accommodation and treatment at the hospice
under the age of 18, where this is appropriate to meeting their
welfare and clinical needs, safety, rights and wishes, taking
into account the welfare and clinical needs, safety, rights and
wishes of children with whom the young adult will be accommodated
and treated in the hospice, and taking into account the availability
of any suitable local palliative care provision for young adults.
(ii) That the process for assessing the welfare
and clinical needs, safety, rights and wishes of both the young
adult concerned and of children with whom they will be accommodated
and treated, should be included in the hospice's Statement of
Purpose and Patients' Guide, and a record kept of each such assessment.
(iii) That the hospice should provide separation
of provision for patients over 18 if this is or becomes necessary
for the welfare, treatment, or safety of any child or young adult
concerned, either through separation of accommodation, separation
of times of accommodation and treatment, additional or separate
staff supervision or support, or by other appropriate and effective
To avoid change in the status of the hospice,
the definition of a children's hospice should include the proviso
that it is "wholly or mainly for children", following
the precedent of the definition of a children's home. The age
range for a children's hospice should continue to enable admission
of babies and very young children, irrespective of any accommodation
and treatment of over 18s.