Transforming specialist dementia hospital care: independent report

Appendix 1: Key findings – Review of NHS specialist dementia care (April 2015 to March 2016)

Introduction

This report outlines the key findings from the review of NHS specialist dementia care environments. This review was conducted by Maureen Taggart, Alzheimer Scotland National Dementia Nurse Consultant, between April 2015 and March 2016. It included 10 NHS Health Boards, over 60 individual dementia specialist care environments and a wide range of stakeholders, including senior managers and executive leads, practitioners and people living with dementia. This unique insight was made possible by the engagement and commitment of NHS colleagues, for which our warmest gratitude is extended.

This report sets out the key issues identified through visits to care environments, discussions with NHS Boards staff and meetings with people with dementia and their families.
A more detailed report will follow outlining recommendations for action and a model of safe transition for people who do not need to remain in these care environments.

Background

The review of NHS specialist care environments resulted from:

1. Themed visits by the Mental Welfare Commission of dementia continuing care units which outlined 17 key areas for improvement (Mental Welfare Commission (2014) "The Dignity and Respect Report: Dementia Continuing Care Visits" www.mwcscot.org.uk/media/191892/dignity_and_respect_-_final_approved.pdf

2. A roundtable discussion on NHS continuing care hosted by Alzheimer Scotland and University of West of Scotland in September 2014. This event was chaired by Professor Graham Jackson and attended by representatives from the Scottish Government, Royal College of Psychiatrists and NHS Boards.

The purpose of the round table meeting was to develop a better understanding of the issues and challenges within NHS continuing care and specialist dementia care settings and identify what could be done to remedy these.

• The discussion highlighted:
• The static nature of the population within these settings was a significant issue that causes pressure on resources.
• Estimates that around 40% ^[oo] of this population had no clinical need to be in hospital.
• The difficulty in organising and supporting discharge to appropriate alternative care settings.

The reasons for the issues outlined above are complex, but were thought to include:

• Financial costs (social versus healthcare), leading to a resistance to move to an alternative setting.
• Continuing healthcare criteria not being applied in many cases (new guidance published in June 2015) ^[pp] .
• Criteria being poorly understood among public and professionals.
• The expectation that NHS continuing healthcare is a "bed for life".
• Lack of alternative accommodation and support.

Approach to review

Ten NHS Boards have been included in this review, with over 60 individual specialist care environments visited by the Alzheimer Scotland Dementia Nurse Consultant with the purpose of developing understanding of the issues around transition and discharge.

Initial contact was made with the Executive and Operational Leads for Commitment 11. Visits were set up with a range of professionals involved in the care and treatment of people with dementia in specialist dementia units ^[qq] in the following NHS Boards:
Ayrshire and Arran
Dumfries and Galloway
Fife
Forth Valley
Grampian
Greater Glasgow and Clyde
Lanarkshire
Lothian
Scottish Borders
Tayside

Meetings within NHS Boards included: Directors of Nursing, Clinical Leads for Old Age Psychiatry, Consultant Psychiatrist, Associate Directors of Nursing, Senior Nurses, Senior Charge Nurses, Allied Health Professionals (Occupational Therapists, Dietitians and Physiotherapists), Consultant Psychology, Social Work, Nurse and Allied Health Professionals Consultants, Community Psychiatric Liaison Teams, Pharmacy, Service Managers and Professional Leads.

Additional discussion was held with people with dementia within assessment and specialist care units and their families. Staff within these care environments were also included in this review. Visits to NHS contracted bed locations in private sector care homes were conducted. Other key stakeholders were also consulted: Scottish Dementia Working Group, National Dementia Carers Action Network, Healthcare Improvement Scotland, Care Inspectorate, Mental Welfare Commission, Nurse and Allied Health Professional National Group, Alzheimer Scotland Dementia Advisors, Alzheimer Scotland Policy and Engagement Managers, Alzheimer Scotland Carers Reference Groups, Scottish Government Focus on Dementia Team, Advocacy Services, Alzheimer Scotland's Head of Operations and National Education for Scotland.

Key findings

1. Admission Units

The main reasons for admission were 1) increase in distressed behaviour in the person with dementia 2) carer distress 3) failed discharge to a care home 4) risk behaviours that meant care could not be safely managed at home and 5) lack of a care package to support the person with dementia to remain at home.

Length of stay varied greatly across NHS Boards, with an average of 8 to 12 weeks – this was up to two years in some instances. Most discharges from assessment units (estimated 90-95%) were to a care home or NHS specialist beds in a hospital or contracted beds. The application for power of attorney and guardianship increased the length of stay significantly – this was generally by nine months.

Some NHS Boards transferred people to "transition units" as they were not clinically ready for discharge. These transitions could last two to three years, with subsequent move to a care home. There was a higher level of access to multi-professionals within assessment units compared with specialist dementia units. However, this higher level of access was not available in every NHS Board.

Most units held reviews once or twice weekly, with families invited as appropriate. Only two areas had a social worker attached to the ward, with all others having a referral system.

Each area attributed delayed discharges to lack of funding and care packages. A lack of care home places was evident for one NHS Board.

There was good practice in relation to pre-discharge noted in two Boards. In one Board, staff and the family would visit the care home to offer support to care home staff – with community mental health staff or liaison psychiatry attending the pre-discharge meeting.

Another NHS Board had consultant-led clinics within care homes which successfully reduced admissions to the ward. The new "Hospital Based Complex Clinical Care Guidance" (2015) was being used in three Boards. In these areas, the review team met with the family one week after admission to discuss the plan of care, hear their views or concerns and provide a copy of the guidance for patients and their relatives.

2. Specialist beds and transitions

Consultant psychiatrists and managers highlighted that they had experienced an increase in complaints in response to attempts to transition patients. Families sought the support of their local MSP, who issued a letter of complaint to the NHS Board.

There were issues around charging policy when provision comes from social care as opposed to health – the financial impact of transition and families viewing specialist dementia units as a "bed for life". In some instances, when the person had been moved from another unit or hospital, families were given a letter to say the person would remain there for the rest of their life.

In cases where discharge to another care setting was proposed, formal appeals from the family were lodged, requiring further review to be carried out by an independent consultant psychiatrist.

In many cases, staff knew the patients well and the family were happy with the care provided – this could result in a lack of motivation for the person to be moved from the unit. Failed discharge to a care home was a common reason why many people remained in NHS care. Length of stay varied from one year to up to 15 years, with an average of 4.5 years. There were diverse needs within the same unit – this ranged from psychological and behavioural issues to end-of-life.

Discharging people with dementia is perceived to be a low priority for social workers, who view the person as being in a place of safety. The local authority insisted on transfer of resources if the person had been in a unit for over a year, as this was classed as long-term care.

When consultants have attempted to discharge people on several occasions without success, it can be seen as a waste of their valuable time to continue to attempt discharge. Many of the NHS contracted out beds have been in place for 20-30 years, with limited reviews of the initial contract. Whilst many of the specialist beds are in community hospitals, some are managed within mental health services and others are primary care, where the GP has limited access to specialist dementia professionals.

There was a general consensus that between 60% and 80% of these beds are not required – the care of this client group could be met within alternative care environments.

Most of these specialist units for people with complex clinical care associated with advanced dementia had no access to the multi-professional team of psychology, pharmacy, AHP, advocacy, etc. The main people involved in care were nurses and the consultant – staff recruitment and retention is a significant challenge for many NHS Boards.

One NHS Board had successfully closed many of their specialist beds and reinvested into community services to support people with dementia and their families to remain in their place of choice. At present four NHS Boards are reviewing and implementing a bed remodelling plan – this is driven in part by low occupancy and units being housed in outdated buildings.

There is real concern, and some evidence, that savings will not be re-invested back into specialist dementia care but utilised instead as efficiency savings.

A further two Boards reported a significant reduction in admissions where psychiatric liaison teams had been established to support the care homes in their areas. The three Boards using the new guidance have noticed a change, with families being much more engaged in the planning and discharge of their family member. One Board had also been reducing their beds due to low occupancy.

3. Specialist bed costs

There was significant variation in the cost of providing a specialist bed – costs of units ranging from £525 - £1,450 were highlighted. It should be noted that although a bed may cost £1,000 per week, this did not equate to access to a greater number of specialist dementia professionals than the less costly beds.

Low occupancy was noted in three Boards of 67% to 71%, which was consistent with the 2014 bed census.

NHS contracted beds were visited in three independent care home providers. There were various models used in these environments such as private sector beds with NHS management and staff, or private sector beds and staff with no NHS management but who could attend NHS Clinical Governance and Quality Monitoring meetings.

Of the NHS Boards visited, two had transferred the care and treatment of a patient to a dementia specialist unit in England, at a significant cost.

Most of the contracted beds visited are involved with the Commitment 11 local groups and have completed self-assessment and improvement plans. One NHS Board is to bring the specialist dementia care beds back into the acute sector from next year, under mental health management.

4. Environments and therapeutic activity

There has been a marked improvement since the Mental Welfare Commission's "Dignity and Respect" report (2014). Many of the units visited by the Commission have been closed, with new dementia friendly units developed and others to be completed by 2019.

However, a significant level of investment is required to upgrade/maintain some of the older facilities. Specialist dementia units continue to be located on upper floors with no easy access to outdoor areas. Features such as long corridors mean these buildings are not fit for purpose, even with adaptations.

It was evident that Commitment 11 improvement plans are making a difference in relation to activities within units. Some NHS Boards have developed an activity room and areas for family to use or stay overnight. One unit evidenced a reduction in falls since the environmental improvements and increased therapeutic activity over the previous year.
Some areas had activity coordinators, with volunteers and community groups providing support for activity and connection.

Although some units had some excellent facilities and activity rooms, the majority were locked, with no activity going on in the unit whatsoever at the time of the visit. Staff shortages and lack of time was normally the reason given for this lack of therapeutic stimuli. When activity was carried out, it was provided by nurses, with few units having access to specialist AHPs to offer support.

Some areas highlighted how healthcare associated infection regulations hampered activity due to the concern over cross infection – this was a huge frustration for staff.

Bed and toilet areas could be shared by up to six people, with no showers or personal wash areas.

Some units had lots of personal effects on display for the people with dementia - this included pictures and soft furnishing. There was also some good evidence of life story work and person-centred care. However, other units were very stark, with no personal affects and presented as very clinical areas.

The private sector units visited have upgraded some of their areas to be more dementia friendly, with the majority providing en-suite single room accommodation. There are also improved dining and lounge areas and access to garden and outdoor areas.

Many of the units visited had activity programmes planned. This included Playlist for Life, baking, pet therapy, gardening, art work, exercise and movement, cognitive stimulation therapy, reminiscence, social outings to places of interest and doll therapy. Some of these activities were supported by volunteers, local primary or secondary school children and nurses or occupational therapists. A few of the areas were in the process of evaluating the effectiveness of therapeutic activity in their units.

5. Specialist AHP, Pharmacy and Psychology

There was great variation between NHS Boards in relation to access to AHP specialists, pharmacy and psychology. Only 50% of the assessment units had access to AHPs and there was very limited access to pharmacy and psychology. The specialist and complex needs units had virtually no access at all.

Most health care was provided by the consultant psychiatrist and the nursing team. All areas could access an occupational therapist from an acute service; however, there was a waiting time issue. When a falls risk assessment highlighted further intervention and referral to occupational therapy or physiotherapy, this was made to acute or primary care teams for further assessment and management.

There was a process to be followed for access to dietitians, speech and language therapists, geriatrician, Macmillan nurses, dentists and podiatrists to mention a few. Only three Boards had access to psychology via a referral process. However, due to increased referrals from community teams, very few people with dementia in the specialist units were ever supported by the extremely limited psychological services.

Access to pharmacy was minimal and normally only to top-up, as opposed to review, medication. No area had a pharmacist who was present at the multi-disciplinary reviews. However, staff could telephone a pharmacist for advice. Dementia assessment units based within the acute general hospital site did tend to have quicker access to AHPs and geriatricians - units outwith acute had a significant wait for assessment.

The Alzheimer Scotland Dementia Nurse Consultant held a multi-professional meeting in each NHS Boards. During these, there was a general consensus that improving dementia care was a priority. However, it was evident that they still received the lowest budget compared with other mental health services.

NHS Boards have highlighted some improvements in investment since Commitment 11 was implemented in September 2014. There was additional funding in two Boards, with appointments to additional psychology and pharmacy welcomed.

6. Skills and knowledge and workforce

The Promoting Excellence Framework had been implemented in every NHS Board visited. The majority had an implementation plan that sat with self-assessment and improvement plans. These were reported to the Chief Nursing Officer Directorate - reporting had taken place in December 2014 and in February 2016.

Skill mix and staff ratio to patients was lower than all other mental health areas – in most areas there were 40% to 45% registered mental health nurses with 60% to 55% untrained staff. A small number of Boards had a skill mix of 55% to 60% registered mental health nurses with 45% to 40% untrained staff.

Not all staff within the community hospitals hosting the specialist dementia beds were registered mental health nurses; however, some did have Dementia Champions on site. Whilst there were Dementia Ambassadors in some of the NHS contracted bed units, there were low numbers of registered mental health nurses, with only three covering a 90-bedded area. NHS contracted bed care homes did evidence training in the Promoting Excellence Framework. This was particularly strong at the informed practice level and they were progressing with plans at the skilled practice level.

All areas visited agreed that staff required their skills and knowledge to be at a higher level–the enhanced and expertise practice levels of the Promoting Excellence Framework were considered to be appropriate. However, this was considered challenging to achieve because of being unable to release staff as staff ratios were too low. Training in responding to stress and distress was highlighted as a priority in all areas. Some areas provided additional resources to assist with the training needs, but many had utilised the "bite size" models from NHS Education for Scotland only and highlighted a lack of support and supervision from psychology as a major issue.

Limited knowledge and skills to support people with advanced dementia and other co- morbidities affecting physical health was a challenge in many areas. Those who had undertaken the "Quality and Excellence in Specialist Dementia Care" programme with NES demonstrated greater knowledge and confidence in caring for complex physical health and delivering end-of-life care.

Some Boards did not have Practice and Improvement Development Support – thus creating an additional obstacle to supporting training. A small number of Boards did train large numbers of staff in "The Journey of Care for Dementia" and had recently trained "Dementia Care Mappers". Some areas had supported staff to train in "The Best Practice for Dementia Care" with Dementia Service Development Centre at the University of Stirling.

7. Experience of people with dementia and their families

Meeting with the families of people with dementia who were resident within the specialist assessment units was, in the main, a positive experience. They talked about being included in care and treatment decisions and being encouraged to offer care and support to their family member. They were invited to review meetings with the consultant and nurse, had completed "Getting to know me" or life story work and enjoyed the freedom in most wards to open visiting times.

This was in stark contrast to the comments provided by family members where the person was within a specialist care environment or had been recently discharged from a specialist complex needs unit (transition and what was previously referred to as long term care). They had expressed concern about the attitude of some staff, lack of empathy and compassion, feeling that they were not actively listened to or that their views were not valued. Many of these wards did not have flexible visiting times and families were not supported to engage and support the person with dementia. They did not have access to specialist multi- professional teams and when attending a review or pre-discharge meeting, they stated that "decisions were made before they were invited to speak".

An issue raised by a number of families was the lack of support and services for younger- onset dementia. When assessment was required, younger people with dementia were admitted to acute adult mental health wards where staff had very little skills and knowledge of dementia care. Families did not consider old age psychiatry wards to be appropriate for younger people with dementia. A few areas did have specialist community services that are multi-professional.