Download Huntington`s Disease relocation engagement Summary of Feedback

Huntington’s Disease relocation engagement
Summary of Feedback and Responses
January/February 2015
LPT is proposing to move its specialist Huntington’s Disease inpatient and community services from
their current base, at Mill Lodge, Kegworth, to a new purpose-built facility on the site of Stewart
House, where we currently provide mental health rehabilitation inpatient care for adults with
complex mental health needs.
The rationale for the move was set out in an engagement document, Proposed change of location
for Huntington’s Disease service from Mill Lodge, Kegworth.
We undertook an engagement programme between 17 November and 17 December. This was
publicised across various media include face to face, via letter, stakeholder briefings, emails and
internal and external news announcements as well as press and social media. An engagement
document and Easy Read summary was produced and posted to referrers, and made available at key
sites, at briefing meetings and online.
Engagement activity included four briefing sessions:
 2 December – at Mill Lodge, Kegworth
 3 December – at Rutland Volunteer Centre
 9 December – at The Peepul Centre, Leicester
 10 December – at Stewart House, Narborough
This was complemented with the option of completing an online or printed survey or feeding back
via email, phone or letter.
We received feedback from 16 people who attended events, two people responded via feedback
forms, one via the feedback email account, nine via Survey Monkey and two via email to the service.
The majority of responses support the planned relocation.
One strong theme emerging from feedback is a request to retain the name Mill Lodge for the HD
service.
Responses from family members have been unanimously in favour of the move, two staff members
do not support a move away from Mill Lodge and one other staff member agrees a move from Mill
Lodge is necessary but feels care of patients should not be from a specialist unit.
One respondent, in feedback around the engagement process itself, expressed disappointment at
the lack of opportunity to be involved in the design of the new building.
Parish councillors from Kegworth are very keen to be kept up to date on the process. While their
feedback indicates they understand and support the move of the service to more suitable
accommodation, they have concerns for the future of the building and any impact this might have
on the community in Kegworth.
Total number of responses
At engagement events:
30
LPT Staff: 1; Service user: 1; Relative/carer 7;
Healthcare professional: 1 Other: 6
Number of attendees at engagement sessions
Number by online survey
11
0
0
5
9
2 December – (Mill Lodge)
3 December – (Rutland)
9 December – (Peepul Centre )
10 December (Stewart House)
Number by tear-out page of document
0
Number by email
3 (includes two from same respondent)
Number of forms from meetings
0
Responses via feedback form (printed)
Number of letters
2
0
Number of telephone calls
0
Number of requests to become member
0
1. Do you support the outlined proposal for the relocation of our Huntington’s
Disease service? Online survey and written response combined
Number answered
13
For
Against
11
2
SUMMARY OF COMMENTS/QUESTIONS AND RESPONSE
Reasons Given for OPPOSING move to
Stewart House
Purpose-built unit in lovely location with all
facilities on hand, individual rooms and units
ideal with different stages of the disease,
from units for assessment and end-of-life
units.
Response
Mill Lodge was in fact not purpose built for HD and
there have been a number of issues associated with
the design of this building in the clinical management
of this patient group.
It’s accepted that the community feel of Mill Lodge
was an asset but the Trust faces issues with isolation
and this is a single unit on its own where we must
provide safe clinical cover. By moving to the Stewart
House site we can share nursing cover and ensure
that we have additional staff when we need them.
This is currently difficult for us as the service is a
distance from other services.
Recruitment is a major problem for us at Mill Lodge
and ongoing issues with recruitment are not good for
the quality of care we aim to provide to our patients.
The transport options for many staff and visitors at
Stewart House should be easier than at Mill Lodge.
This proposal is about bringing people and services
together, i.e. an existing 30-bed mental health
rehabilitation unit, together with a new 14-bed unit
designed and built specifically to meet the needs of
patients with Huntington’s Disease.
The Stewart House site shares the assets of a lovely
location and is very much an integral part of the local
community. Funding the necessary improvements
needed to bring facilities up to date at both sites is
not viable. We see this as an opportunity to take the
very best features of the Mill Lodge service and
transfer them to a new unit where we can use
resources to improve the quality of care for the
immediate and long-term future.
I agree Mill Lodge is too isolated from the
rest of the mental health service.
A majority of the patients I feel could be
managed in residential/nursing care.
Some of the more complex patients have
issues that require behavioural intervention,
which could be added to the Willows.
Any other issues could be better managed
via crisis team.
Crisis team should be better equipped to
deal with these patients.
Perhaps joint working with social services
would be another option as the needs are
often social affecting mental health.
Due to the progression of the disease process for
some patients with Huntington’s Disease it has been
proven difficult to treat, clinically manage and place
this group within other services.
The patients who are nursed within the Mill Lodge
unit are admitted for assessment, review and a
structured multi-disciplinary team approach to
enable them to return to wider community.
Some patients, due to the severity of their mental
and physical health problems, benefit from the
specialist nursing team who have the knowledge
base to manage the most complex of patients with
Huntington’s Disease, through to the end stages.
With regard to the patients being managed by the
crisis team the very nature of Huntington’s Disease
makes it very difficult to manage patients without the
familiarity and routine of a team they know, and this
is achieved by early intervention of the community
HD team who work with patients to address their
needs and support them throughout the Illness.
We believe we are one of only three specialist NHS
Huntington’s Disease service providers, and we have
out-of-county patients from across the Midlands. We
want to build on the quality of this service and would
not wish to dismantle the expertise, care and
reputation we have built. In order to achieve this we
need to ensure the service is sustainable.
Comments in support of move
We appreciated having the opportunity to
see the proposed plans and hear of the
plans to achieve as smooth a move as
possible for Mill Lodge patients.
Fantastic idea, that site will be great for
developing.
I support the proposed relocation to Stewart
House wholeheartedly. A good case has
been made. It makes such obvious sense
from access, staffing, nursing, economic and
estates reasons that I am tempted to ask
why this decision was not made long ago.
Moving to a more central site has got to be
Thank you for the supportive comments, we agree
that this proposal, if it proceeds, will allow patient
and staff needs to be better met, both now and into
the future.
better for families when visiting. I look
forward to seeing the service grow as it
starts in its new home. Good luck.
You have a centre of expertise here and this
is our legacy.
I like the idea of people being brought down
to watch the new building growing, it’s a
wonderful one.
I support the proposed relocation to Stewart
House wholeheartedly. A good case has
been made. It makes such obvious sense
from access, staffing, nursing, economic and
estates reasons that I am tempted to ask
why this decision was not made long ago.
OTHER COMMENTS
RESPONSE
Name of relocated service
The name Mill Lodge to be retained.
We will involve patients, staff and stakeholders in
helping to decide the name of the new unit.
Keep name of Mill Lodge please
PLEASE could the name of Mill Lodge be
retained for this new unit so that it retains a
separate identity from the attached Stewart
House
Retaining the family/community ‘feel’ of Mill Lodge
People in Mill Lodge have lived here years
We feel that in making this move we can improve on
and it’s like a family and if you can transfer
an already excellent service. Although this is a small
that we can build on it.
service we wouldn’t want to stop providing it. For
those people who live in Leicester, Leicestershire and
We want to see a team with as little
Rutland we know we already provide an excellent
turnover as possible, it’s been a particular
service and to continue do this we do need to make
issue here for the last couple of years.
some changes.
NTS
We are confident that the Huntington’s Disease
service’s excellent staff-patient relationship can
transfer with the service to a new facility that has
been built specifically to meet the needs of these
patients.
Patients at Mill Lodge have a strong
affection for the service. The very thing that
people love about it is it’s in the local
neighbourhood. Carers appreciate the staff
and their passion for the clinical care
provided.
We also believe the move to the new site might well
provide opportunities for patients to socialise more
in the future.
The Stewart House site shares the assets of a lovely
location, is very much an integral part of the local
community, and it has beautiful grounds which are
an asset patients can enjoy.
We believe the two services each provide a natural
complement for the other in terms of staffing skills
and patient needs. The Stewart House site also
offers us the potential to develop the site and the
service further.
Resources, development of services
Would like to see more resources dedicated As part of the process to relocate services from Mill
to the HD service - full time physio, dietician Lodge to the Stewart House site, if approved, we will
and OT input in the community as well as
inpatients
One of the two wards at Stewart House has
been empty for some time. One option for
Mill Lodge is therefore to move into the
empty ward. Has a thorough feasibility study
been carried out?
review all clinical service input to ensure they are
able to meet patient needs. However, it must also be
remembered that there is a finite amount of resource
available.
The patient numbers at Stewart House have
increased in recent months and there is no spare
capacity available to also accommodate the
Huntington’s Disease patients.
The option to co-locate Huntington’s Disease and
mental health rehabilitation patients in the existing
Stewart House footprint was explored but was not
viable from an operational, service quality or financial
perspective
Future proofing the new service
If a patient receiving care in the community We have a Huntington’s Disease community team as
becomes worse will there be capacity in the well and over last six months have been reviewing
new unit to care for them?
the needs of patients. We are confident that the
proposal to create a 14-bed unit will provide the
appropriate capacity
Could more HD beds be provided but used
We provide a high quality, specialist Huntington’s
for other patients if demand isn’t there?
Disease service and this is what we want to focus on.
This is an opportunity to improve facilities for this
client group going forward into the future. When
developing proposals for a new development such as
this it has to be financially viable, so building a larger
unit for more patients is a significant risk if the extra
demand cannot be guaranteed. We believe we have
got the capacity of the unit right, based on our
experience of demand for these services over the last
few years.
Stewart House is an excellent facility on a
If the Trust decides to go ahead with this proposal
superb and valuable site. However it has
following the full business case being finalised it will
suffered for some years due to its uncertain be demonstrating a commitment to the whole site.
future. Narborough is obviously better
Building a new unit for those people with
located to serve the county than Kegworth
Huntington’s Disease will not compromise our ability
as it is more central and accessible. This
to develop the site further in the future, should that
relocation needs to be part of a whole site
need to be considered.
strategy for Stewart House
Quality of new proposed facilities
Is it a new building?
Yes, the proposal is the construction of a new
purpose-built building with a connecting corridor to
the existing Stewart House building, allowing access
sharing facilities and easy movement of staff and
visitors.
The proposed option obviously provides the If this proposal proceeds, subject to planning
opportunity of more suitable tailor-made
approval and the full business case being supported
accommodation for the Huntingdon’s
by the Trust Board, it will demonstrate a vote of
Disease service, assuming that the new build confidence in the whole site and the services
can be appropriately funded. But the future currently located there. The existing service at
of the existing wards at Stewart House
Stewart House would continue to provide a mental
should be clarified as part of this business
health rehabilitation service.
case.
New buildings for the NHS are to be
welcomed as part of providing better care in
up to date settings, improving the building
stock in energy efficient and more
sustainable buildings. For these reasons, and
subject to the caveats outlined above, I
support the case for a new building.
However I would like to offer the following
comments on the proposed plan.
Comments on the proposed plan.
1. The location is poor in that it is
crammed into a tight corner of the
site hard up against the boundary.
2. The plan does not relate in any way
to the existing plan of Stewart
House, and as such is an
architectural disaster. The new
building clashes with the existing
and ruins the outlook from the
windows of Stewart House.
3. The deep plan means that the roofs
will be very high and dominate the
delightful low scale of Stewart
House. The new building will
therefore have an inappropriate
scale. This will be exacerbated by
the rising ground floor level in that
part of the site.
4. The deep plan does not enable
natural light and ventilation to
penetrate to the centre of the
building (despite roof lights). This
does not help sustainability and the
BREEAM scores.
5. Consequently the corridors will be
dark, straight narrow and
unpleasant for both patients and
staff. The building is therefore very
“institutional”. Views out are vitally
important for orientation, wellbeing etc. There is a huge evidence
base of research on the benefits of
daylight and view for health care. (I
can provide this, if needed). For this
reason, the best of recent new
facilities are planned with
circulation routes alongside
courtyards, and sometimes using
curved corridors, all of which
reduces the institutional feel of such
buildings.
These comments have also been made directly to
Blaby District Council in response to our planning
application to build the new unit on the Stewart
House site.
We will continue to work with the local planning
officer to resolve any issues or concerns that are
raised ahead of the planning application being
formally considered. A meeting with the person
submitting these detailed comments is also being
arranged to discuss them in more depth. However it
worth making the following comments:
Experienced and expert clinical staff, planners and
architects have been involved in developing the
plans, and we firmly believe the new unit will meet
the needs of patients into the future. The design of
the new unit is based on other recent new-build
inpatient facilities within the Trust that have
benefited from service user and carer input.
Additionally, had the engagement process identified
anything significant that we had to alter or change in
the plans then we would have considered this even if
it meant the timetable for the scheme needed to be
reviewed.
We do not believe the corridors will be dark as we
are working with the architects to ensure the space is
light through the use of natural lighting and space
wherever possible.
6. The T- shape plan is efficient but
institutional and uninspiring. It is a
fairly standard arrangement and as
such could provide some future
flexibility for mental health should
the Huntingdon’s Disease service
not continue. It bears some
resemblance to the Watermead Unit
at Glenfield and one hope that
lessons have been learned from that
development, the newest of LPT’s
buildings.
7. The T- shape plan does allow a
degree of male / female segregation
with flexibility in the centre.
Hopefully this is intended?
8. The plan and location simply does
not take advantage of the potential
views out and landscape
opportunities that this site offers.
The majority of the bedrooms look
out onto the boundary wall and
hedge which is at a higher level i.e.
there is no view and noise from the
adjacent site could be disruptive.
9. The proposed small
garden/courtyard is important and
relates well to the sitting room on
the south facing (sunny) side of the
building. This is good but only two
bedrooms look out onto it.
10. The proposed corridor link to the
new building is appalling. Whilst the
need to share the main entrance
reception with Stewart House is
understandable, this link does not
work. It does not lead directly off
the main entrance and therefore is
not obvious from a way-finding
point of view. It splits the existing
kitchen from the dining room
making dining arrangements
dysfunctional. It destroys the
outlook from the dining/function
room which is surely fundamentally
important to Stewart House
residents. This illustrates that the
new building is in the wrong
The feedback from consultation with carers is that
observation will be key, and we feel this design
supports effective observation and will endeavour to
make good use of the space in terms of ensuring our
patients are cared for safely throughout their stay.
We feel that a good use of external planting of shrubs
will assist in a pleasant feel for the patient in terms of
the views. The feedback we had at one of our
engagement events is that this design felt “safe” as
there was less opportunity for unwanted visitors to
see into bedrooms.
Yes the existing car park will have to be relocated and
this forms part of the planning application.
location.
11. The existing car park will have to be
re-provided if this location is
chosen.
12. Guidance for this type of building is
available in Health Building Note no.
03-01 “Adult mental health units:
planning and design” (March 2013).
Does the proposed design comply
with these recommendations?
All relevant NHS Health Building notices have been
considered.
I personally would like to see the option of
siting the new building to the northwest of
Stewart House fully explored where it would
have a better architectural relationship with
the existing and take advantage of the
landscape opportunities offered by the site.
This location would allow direct access to
the existing excellent occupational therapy
facilities. An independent entrance would
be needed, or a link corridor created but the
existing car park would need to be
relocated.
I would like to see the accommodation
planned around a central courtyard with the
circulation route opening onto it. This
configuration aids orientation for the
patients, provides daylight and improves
well-being
It occurs to me that the engagement
process undertaken by LPT was carried out
when the details of the proposed new
building had already been decided and
detailed plans agreed and submitted. This
does make the engagement /consultation
process somewhat pointless. It would have
been more meaningful if the process had
been carried out prior to detailed plans
having been agreed so that comments could
have contributed positively to the proposed
solution.
Staff experienced and expert in the care and
treatment of patients with Huntington’s Disease,
planners and architects were involved in developing
the plans for this new unit and we believe that, if
progressed, they will allow us to meet the needs of
this client group when the unit opens and into the
future.
If the scheme is approved by the Trust Board and we
move into the next phase we will be inviting staff,
patients and relatives to participate in deciding
colour schemes, fabrics, finishing touches and
furnishings.
The future for the Mill Lodge Building in Kegworth
Many villagers will miss the service, but
If the full business case Is approved by Trust Board
don’t have an issue with the arguments for
and the preferred scheme progressed, it will still be
moving. Main concern is around the building more than a year before the move from Mill Lodge to
– do not want to see it become derelict.
the new facilities on the Stewart House site take
We would like to maintain our contact with
place. We are committed to maintaining an open
updates and be engaged in the future fate
dialogue with parishioners and community
of the building. Many villagers have worked representatives in Kegworth to ensure the best
on the site
possible outcomes for the Mill Lodge site are
achieved.
The community wants to be involved in the
future of the building and there are
concerns about the future potential use of
the building, or the risk of it becoming
derelict.
Personally I don’t want it to become a
private nursing home. It occurs to me that
individual s can register the building as a
community asset and I will be firing on all
cylinders to keep it as an asset for the local
community.
Can you foresee an alternative use for the
Mill Lodge building by the NHS?
The location and design of the building make it
expensive to staff at a safe level. Also the physical
environment is likely to require significant
investment to endure it complies with current NHS
standards into the future.
Previous planned changes have stalled
We had similar discussions a year or two
We must move to ensure the sustainability of the
ago and the plans stalled.
service and the last thing we wish to happen is to
create more uncertainty. We are committed to
making the best decision for our patients and to
keeping people informed and involved. However, we
must also stress that the final decision to relocate
services is subject to planning approval and the full
business case being approved by the Trust Board.