GETTING OUT OF HOSPITAL
Beyond Limits predominantly plan with and then support people with learning disabilities and mental health needs who have had to spend often very long periods of time in Assessment & Treatment Units and Specialist Hospitals. We help people get put a service together that works for them using Individual Health Budgets (IHB), which involves a home of their own and a team matched to them (shared hobbies, interests, temperament etc.) or in other words a team that they like being with!
The process from start to when the person settles into their own home can be long and complicated so we have put together this fact sheet to help our teams understand what others do and what they need to do in the planning and transition process.
SERVICE DESIGN AND WORKING POLICY
Arrange and facilitate a service design meeting
This then forms a tender or can be used to RAS the Individual Health Budget
Arrange and facilitate a working policy meeting (to form the care plan with the provider/PA’s providing the support)
Ensure Court of Protection Deputy is necessary at least 6 months before housing is needed.
Look into any savings etc. that may be able to be used for more bespoke housing options.
From Service Design – team specification for advert and job spec and how family/person want to be involved in recruitment, housing specification, hopes and dreams for targets, natural and AT support requirements, next step actions, family role.
The working policy forms the starting doc to be worked on during transition by the team getting to know the person. It is done in a way that all known safety issues are discussed and plans formed with the multi-agency, family and person to agree robust support especially when things are not going well.
The costings need to include transition costs (period of time for staff to work alongside the person, travel expenses and accommodation expenses)
Work out team hours, and make up of team.
Decide with person and family who will interview and how. Sometimes the Hospital will not let then attend so we have used video and the person coming up with questions. We also always send photos of interviewed candidates if family and us first interview.
Write advert with person/family based on ‘what people love about the person from the service design’ and a bit of the behaviours
Advertise roles in paper to start and our website – but when they move locally in shops too
Send the application forms to family for comments and selection and arrange interviews/initial meetings.
If person not able to come to interviews arrange how they can be involved (e.g. thinking up questions, getting the candidates filmed answering questions)
Interview with family/person. Team selected on ‘match’ over experience. Shared hobbies and interests. Experience needed for team leader though.
Once team have been employed they have a full Induction here and get to know service design and working policy.
We hire a house/accommodation near to the hospital and agree with the Hospital for our staff to start to shadow the person and team there.
Need to develop a working relationship with Hospital. Although they have been involved with service design and working policy so know what we are all about.
Arrange visits and shadowing. Support to complete daily notes, shadow as much as possible at different times of the day and night and ensuring they have knowledge of medication, seizures (if relevant), behaviours and routines.
MINISTRY OF JUSTICE
If people are on certain sections of the mental health act that involve the Ministry of Justice agreeing to the discharge arrangements then a plan involving them must be started as soon as a Service Design is being arranged. The Ministry of Justice will not agree a discharge if they are not assured of public safety. Their agreement is also reliant on housing being suitable to the person so this will mean planning the housing in conjunction with everyone involved.
Locate GP surgery, dentist, opticians, podiatrist, local Hospital, eye infirmary and all relevant health related services and make referrals where appropriate. Obtain ID for the person – may require passport photos, letter from Care Coordinator.
Work out bus routes, start to look at local neighbourhood and identify key people and places, start to introduce arrival to local shops etc (all positives). Look for opportunities linked to the person’s assets in the locality – ways to contribute and give back.
Explore job and education opportunities. Think of ways to involve neighbours in arrival, garden party, BBQ, offers of cat feeding when on holidays etc.
When first starting service design process look at savings and whether there are any that can be used for house deposit or shared ownership. Also make sure if there is any issues with capacity to sign a tenancy or get a mortgage that the court of protection application is put in for (this can take up to 6 months). Get person on housing register with local council. Complete housing specification based on service design information.
If money then shared ownership or buying a house through a Trust will ensure the greatest security of tenure. If shared ownership is an option then this process should be started as soon after service design as possible as it takes time (as long as it takes to set up a mortgage and buy a house from the open market).
Use housing specification from the service design to search for an appropriate house.
Search for appropriate housing with those involved (remember to involve OT if any adaptations and care coordinator) and find a house, view house and a joint agreement should be made on suitability. Always involve person and/or family in the search. Houses cannot be bid on until there is someone in place who can sign the tenancy. Bid on a house through Council process, or arrange private rental or shared ownership arrangement.
Once tenancy is agreed, a meeting with Landlord to go through tenancy agreement is needed. They may want to understand the support package before agreeing a tenancy so the person should be away of this. The Landlord should be aware it is their duty to provide a tenancy in a format understandable to the person if they have capacity to understand a tenancy. There are many easy read versions and the Housing & Support Alliance are a good source of information if the Landlord is struggling. All info on support needed with a person’s tenancy should be included in their working policy.
Establish who the supplier of utilities are, when the bills start from (record readings on meters) and where shut off points are for the following: Electric, Gas, Water. Ensure the person has the best deal for utilities in conjunction with their Deputy if they have one.
If there are issues around fire or arson ensure that the fire prevention team are involved at service design stage and can advise on any fire prevention systems and escape plans that may be needed.
If any restrictive practices are needed – alarms, sprinkler systems, sensors etc. ensure best interest meetings agree before installation.
Ensure you have up to date information on benefit entitlements (some may have been suspended for the person whilst in Hospital) and knowledge of what can be claimed.
Ensure all benefits are applied for that are applicable.
Ensure a plan is in place with person and appointee/families (where necessary) regarding budget (living expenses and bills etc.) that can be put in place as soon as they move. It should include all income and outgoing monies.
Ensure arrangements for staff food and drink are agreed with person and recorded in working policy both for whilst at home and out and about.
Set up bank arrangements for any support funds needed getting all team staff signatures.
HEALTH & SAFETY:
Ensure a Hospital passport is put together and epilepsy or other health related plan (if appropriate) has been completed. There will also need to be a contingency/crisis plan developed with the community team, and any arrangements agreed and recorded about Guardianship or Community treatment or MAPPA arrangements and that the relevant police or other services have information about their roles on their communication systems.
Make an Introduction to GP and learning disabilities liaison nurse at local acute Hospital. If the person will frequent A&E a meeting should be arranged with a Consultant form A&E so that there is a joint agreement on how we all work together to manage admissions. The plan with A&E should extent to hospital admissions as well as sometimes the plan stops at A&E and people are treated differently when in the actual hospital. If ambulance travel is also used then they too need to be aware of plans (and have a plan on their communication system) to limit admissions (this is vital especially for people with personality disorder type diagnosis).
Inform the GP of the person’s intentions to register within their surgery as you may need to obtain ID and ensure medication is ordered and is ready to collect when the person arrives at their new home. Ensure the pharmacist is instructed to provide blister packs if required. Obtain any relevant aids of support e.g.: seizure bed alarm, iPad, sensors.
Write up a Police passport and contact police and meet with local community liaison officer. Support the team in understanding the passport so they can advise police if they arrive at the house.
Establish where the person will be taken if arrested under s136 e.g.: local psychiatric in-patient unit or whether they will be returning the person to their own home. Establish knowledge of an appropriate adult and support the team to understand their responsibilities and limitation’s.
Ensure any health and safety systems are in place: carbon monoxide alarms and fire extinguishers, blankets and means of escape.
Ensure team are aware of the mental capacity act and undertake these before the person, or soon after the person moves to their home so that you do not start off over-supporting a person:
· Tenancy assessment
· Medication Capacity Assessments
· Financial Capacity Assessments
· Capacity Assessments for other areas
As the Individual Health Budget Project Beyond Limits is part of in Plymouth enters its second year, I have started to meet and work with some families who have different views from those we met in year one. These families don’t want their relative to move out of the Specialist Hospital setting they are in despite them being hundreds of miles from home.
This is not to say that these families are not just as passionate about their relatives, nor do they love them any less, and they still only want what they feel is best for them. These families have just been so profoundly affected by the lack of support, failed services and rejection by the systems that were meant to protect and help them and their relative in the past that all trust, hope and optimism for the future has disappeared and they are very scared of any change. It has been truly humbling to listen to the heartache and mental stress these families and their relatives have been through trying to make things work when they lived more locally, and for them to still take part in planning for the future.
I took two of these family members in my car on the 750 mile round-trip to do a service design meeting for their relative. These trips are very useful (about the only thing about someone living so far from home) for getting to know people and listening to their story as 14 hours in a car makes or breaks relationships!
They were grateful for the lift as their usual journey four times a year takes 24 hours round-trip on a bus. They have been making the trip for over 8 years now and have had to make it into a mini-break as it is too far to do in a day (paying for travel and accommodation themselves). They don’t want things to change and would rather make these trips than bear the consequences of another placement in the community for their relative.
One of the family members summed up how they felt about their relative being in a Specialist Hospital, and wanting them to remain there as; ‘he is not hurting, he is not hurting anyone else and no one is hurting him’. I found this statement very profound but could not blame them for wanting so little for their son after hearing the catalogue of disasters, poor support, and heartbreaking decisions they had been forced to make, including sending him away, when he lived nearer home and things went wrong. They are also both retired and could not imagine how they would cope with the worry and involvement they used to have to give, as they were always called to help out, when things went wrong. And they can’t imagine, nor have any faith in, it not going wrong again.
All this makes me both angry and sad on two counts, not with the family but with the systems that I have been a part of in the past, which enables this situation to ever exist.
Firstly, we do families a great disservice when discharge planning is not started on the day that their relative is admitted into Hospital. This enables families to gradually fall into a false sense of security that their relative may be able to remain in the Hospital environment long term. No one would blame them for this hope, when for perhaps the first time in years they are able to breathe a sigh of relief that they don’t have to worry for a while and can get a semblance of life back, but then weeks become months and soon the years roll by and their relative is still in Hospital
Secondly, if a person is admitted for assessment and treatment surely the Hospital should be made (through commissioners) to give detailed plans of what is to be ‘assessed’ and ‘treated’ and a timescale for release? Treatment is surely a short-term thing so I wonder what is still being ‘treated’ after 8 years. Should they not then be held accountable if the treatment is not successful in the timescale? These are questions I have yet to get a good answer to. Interestingly the Specialist Hospitals that have engaged most proactively with us on this project have been those where the person has been there for less than a year as they are keen for the person to move on.
The expense of someone living away from their community is immense in all senses of the word; emotionally, treatment costs, costs of visiting and professional visits and reviews plus the costs of transition back home which should not be underestimated. When are we going to learn to spend time getting it right first time, and not giving up on people in their local communities?