My role as a case manager includes supporting clients with rehabilitation, support and personal care needs.
While some clients will benefit from a support package staffed by directly employed support workers, there are times when the best fit for the client will be to work with a suitable care or nursing agency to provide this support. Whether the client requires directly employed support workers or specialist agency care, establishing a successful, individualised care package has always been challenging proposition.
More recently, the scale of this challenge has increased substantially.
Across the UK there is awareness of the pressures on the care sector (both within public and private services), which have significantly increased over the last couple of years; only recently the British Association of Complex Case Management (BABICM) conducted this piece of research which highlights the challenges faced by users of care services, staff, commissioners, providers and coordinators/managers of care.
In the context of the current challenges, there are a range of factors case managers consider when supporting their clients to choose their care package provider.
Often the first place to start is with funding. Is the care package going to be funded by the state? – via health, social care or joint funding. This means that the case manager has to be able to support the client to navigate through the health as social care funding assessment processes.
As a case manager, statutory funded care means that your ability to be closely involved in the choice of provider may be extremely limited to non-existent and is often dependent on the relationship you have with the local commissioner.
If a client is entitled to this source of funding then clearly it is the start point and should be considered. It is likely that the local authority or CCG will defer to their list of approved providers, and a match could be sourced via that route; but it doesn’t mean that alternative providers cannot be suggested. It may be that a specialist provider can be considered and added to the approved provider list or spot-purchased, but it may be that direct employment is the best way forward.
As a case manager, sharing information, assessment outcomes, knowledge and recommendations with the commissioner – in the context of knowing your client’s case in depth and as to advocate for your client’s needs – is an important part of the process.
It is not unusual to find that you have to start from the beginning; explaining the role of the case manager and then forging a working relationship with the commissioner before moving on to this. Unless they have encountered the role previously it can be confusing to understand the remit and role of the case manager and I often spend time mapping that out in the first meeting.
Our roles may differ, but we generally aim towards the same outcome so our duty is to ensure that we communicate in accessible terms and agree a partnership to get the best-suited care package possible withn the frameworks for that client.
Despite the potential benefits, it remains the case that personal budgets are not widely taken up – I would say that despite their launch some years ago there is little in the way of information and guidance for either the professionals looking to implement or access them, or for the client looking to take up the opportunity and their responsibility to manage and coordinate them. Direct employment via a personal budget gives the person more control, along with more responsibility and so it is not for everyone.
Employment issues and staff management is a specialist skill and our clients may not want to dip their toe into this at a time when they are seeking additional support to meet their needs. There is also the matter of whether the person has capacity to manage and consent to their own care, whether personal care is required, and whether funds are managed by a Court of Protection deputy, all of which bring different considerations to the fore regarding which routes are open for consideration. Often the most bespoke and specialist care packages I see are directly employed but by the very nature of my role, they also have a case manager in the mix, supporting where required.
With a case manager, the matter of managing a personal budget becomes less cumbersome and anxiety provoking for clients and there will be a level of evidence and governance embedded when the review date comes round.
Agency care packages are another widely used option and a criticism often advanced is that use of an agency is more expensive. I would argue that this depends entirely on the nature of the support package. If you consider an agency hourly rate (which includes recruitment, training, coordination, rota management, supervision, records management, payroll and holiday/emergency cover) this may in fact be cheaper than paying a case manager to manage these areas where a client is unable to do so themselves, particularly when the client requires only limited or sessional support.
Case managers are only able to direct and manage regulated care activity when they (or their organisation) hold CQC registration and currently not all providers have that governance in place, so therefore cannot legally establish regulated care without the use of a CQC registered agency.
More recently we have seen the emergence of ‘blended’ hourly rates being charged by care agencies which removes the issue of different hourly rates for weekends, evenings and bank holidays and provides one set rate which takes of this all into account. We are yet to see whether this has an impact on cost to the client but it certainly makes understanding costs of a care package more accessible.
Alternative options include ‘care brokerage’ companies which provide a middle ground, helping clients to recruit and set up a care package with a view to taking them on direct employment once the package is established. It is great to see that choice and accessibility is widening but I also think that ‘necessity is the mother of invention’ and there has been a need for a broader range of options, of which this is one.
So funding and navigating the appropriate pathway to implement a care package is complex – and that is before we are out of the starting blocks. As a case manager not only do we need to consider the options, we must also support our clients and their representatives to access them and be clear in the rationale for each route and any choices and decisions at every step of the way.
Some of the reasons that may influence the rationale of the case manager are obvious, others are less so. Care needs and complexity are a huge factor and this is where a comprehensive, holistic assessment is vital. A clinically very complex care package requiring specific expertise may be best met by a specialist agency to provide a range of nursing, behavioural or other skills which might be challenging to attract to a direct payment funded package. Similarly using an agency would be indicated if one were to be expecting a high turnover of staff due to the nature of the package or the client’s circumstances; the agency option can potentially minimise the burden of cost of recruitment and training which would be borne by the agency, who are best placed to do this more cost effectively across a service where they can re-deploy staff.
The logistics of a care package may influence the choice. Are carers located close by to the client? How many visits per day are required? Are ‘live in’ staff required? Are a specific set of support worker characteristics necessary for the client? For example if a client requires specifically either male or female support, availability is reduced by roughly 50 per cent (and likely more if the need is for male support). Then if they need a driver the percentage reduces further. Then if they have English as a second language and require a speaker of their first language then the percentage drops even further. This may sound extreme but it is something I have come across on cases.
What if the client that has recently sought case management support is receiving palliative care? In these circumstances agency workers can be a choice which better protects the client should there be unplanned events and sickness impacting on care shifts and may potentially protect the worker from sudden unemployment in the event of the client’s death.
On the flip side however, directly employed staff could be seen as being more able to provide consistent and personalised care under these circumstances and at a critical time at the end of someone’s life. As all the parts of the decision making come together it is clear that this can present complexity when individual needs are considered in depth.
All of the above was a challenge before Brexit and before the pandemic and now we and our clients face additional difficulties. Care staff are tired and rates for care have risen. Care staff are tired with the work they have relentlessly done through the pandemic, tired with poor pay and conditions, tired of being viewed as unskilled workers with low regard for their skills and expertise. Hourly rates have more recently risen to reflect the value of care provision and also to reflect the scarcity of resources and the need to promote retention in the industry, but this presents a challenge for funding and represents a mismatch between capacity and demand.
So what does that all mean in practice? Some thoughts:
- There is no substitute for a clear and comprehensive assessment of needs as a starting point to building the right care package and case managers are well placed to work with the client and provider to make sure this is possible.
- Care providers who provide good quality records, which outline needs, interventions and impacts are incredibly useful for the case manager (and if the case is in litigation, also the legal team). This means that concerns and queries can be addressed quickly and evidence of care needs are available to paint the picture of recovery and future need for when the legal case is approaching settlement.
- It is helpful to know the client’s CCG and their local care providers – having an understanding of the frameworks and local nuances as well as proactive working relationships with key people can help with communication and therefore meeting the joint goals we are all working to achieve.
- The cost of care is rising and sustainability of care packages in the community are being challenged but with the right set up, the right terms and conditions and the right match of client to support workers this can be avoided or at least minimised. It is also important here to note the thought – what indeed is the cost of poor quality, or no care?
- Excellent care cannot be bought cheaply and neither should it be; costs should reflect the quality expertise and importance of the role. We need to be able to access adequate funding for our clients via whatever route – however that’s another blog, for another day!
Finally, collecting and sharing views and experiences of professionals and those they support in forums and surveys such as the BABICM ’Perfect Storm’ and the government’s call for evidence on acquired brain injury helps inform both the local and national position, which one can only hope will assist in moving forward, closer to a position of being able to source well-resourced and excellent quality of care with fewer challenges on the road to achieve this.
Dementia care – how to use storyboards
Dementia Carers Count look at how this valuable creative tool can be used at home
Do you know that people living with dementia often process visual stories and information better than verbal communication?
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships. Visual aids such as storyboards can help maintain mental wellbeing for both the person with dementia and for the carer.
Sue Hinds, head of services at Dementia Carers Count, takes us through a range of techniques that carers can adopt (or adapt).
When and why visual support might be useful
There may be times when you need to support a person with dementia in attending events which are important to them. This might include appointments with the GP or other services, family events, shopping excursions, planning a trip and opportunities to engage in hobbies and pastimes.
We know that people with dementia often have challenges in both understanding information provided to them and/or retaining the information for long enough for it to be meaningful.
Carers tell us that a range of situations and emotions can arise. This could include the person with dementia refusing to go because they genuinely believe they were never told about it. Anxiety about where they are going, confusion, disorientation, agitation, distress, tearfulness, a sense of unease, and many more emotions can all emerge.
These situations can also provoke a range of emotions for you as a carer including stress, worry, fear, frustration, and anger.
Things we know:
- Providing information in bitesize chunks can help a person with dementia.
- Providing visual reminders can help.
- Visual information is often better understood than verbal information.
- Visual information can be referred back too, spoken descriptions (unless recorded are fleeting).
- Step-by-step instructions help.
- Visual formats can help a person express their concerns more clearly.
What are story boards?
Storyboards are one way to help support a person to understand, remember and engage fully with a meaningful visit, event or routine either inside or outside the home. They can capture key elements and stages of an event with images which can help the person to understand the event and will help to describe the actions at each stage.
By creating a storyboard, it can help you to identify all the stages and can help you think about what situations might arise, and can support a person with dementia to express areas which give them concerns.
Often storyboards can then be adapted or used again for other events.
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships, and a storyboard can help maintain mental well being for both the person with dementia and the carer.
They provide a way to cope, help to maintain relationships and provide a new way of coping with challenges – providing a new way of thinking, behaving and interacting together even when things are tough.
How to create a storyboard
Generally, a story board can look how you want it to look, but they should not have too much information on a page as this can be overwhelming.
You may wish to create a storyboard on one page, or a storybook where you flick from one page to the next, or even a storymat where you can add, remove drop things down into a ‘we are here now’ section.
Follow the steps:
Think about the task e.g. Going to the doctors, and then think of all the steps which will happen (this is unique to your own routine):
- We need to get up and out of bed at 8am
- We will go downstairs
- We will have breakfast
- We will go to the bathroom and have a wash
- Clean teeth
- Get dressed
- Go to the car
- Travel to the surgery
- Wait in the waiting room
- Go in to see the doctor and talk to the doctor
- Say goodbye and leave the surgery
- Get back in the car and drive home
- Arrive home
- Sit down in the kitchen for a cup of tea and a cake
Ideas of things you can use to help you
There are lots of symbols and resources which you can purchase to help with this, but a good tip is to also take photos within your own home and when you are out and about with the people and places you visit. This will help you to tell the story with as many familiar pictures as possible.
It’s also often worth taking photos during a familiar event so these can be used in the future. However, if you need some symbols there are various sites you can purchase them from and I have listed a couple below.
The creative visual aids website also gives a wonderful explanation of how visual aids can be used to support children, but the principles are exactly the same. The video below talks about the use of storyboards with children and I am currently in discussion with Gina regarding storyboards for people with dementia.
Talking Mats is another incredibly useful resource for supporting conversations, with videos and case studies of how visual aids can help a person with dementia in conversation and day to day life.
Good luck creating one, and have fun – we would love to hear from you with photos, descriptions and stories of how and when you use them. Perhaps you could also inform other carers through our forum: Virtual Carers Centre | Dementia Carers Count
Supporting mental and physical needs in complex dementia
St Andrew’s Healthcare look at the importance of meeting the needs of this client group
In supporting the mental and physical healthcare needs of people living with complex dementia, specialist expert support is vital to achieving the best possible quality of life.
St Andrew’s Healthcare is renowned for its work in this area and for its support of people and their families. Based within its Northampton site, the St Andrew’s neuropsychiatry service supports people with the most complex neuropsychiatric needs.
The service extends across Kemsley, the hospital’s brain injury unit, which has pioneered specialist neurobehavioural care since it opened over 40 years ago, and Lowther dementia hub, a bespoke environment opened in 2020 that is designed to meet the needs of people living with complex dementia and other progressive neurological conditions.
Working with older people within a neuropsychiatric service requires a range of specialisms. Here, we meet two of the multi-disciplinary team at St Andrew’s as they explain the importance of meeting the mental health, but also the physical health, needs of this particular patient cohort.
Muthusamy Natarajan, consultant forensic psychiatrist
My name is Muthusamy Natarajan, I’m a consultant forensic psychiatrist and also clinical director for the neuropsychiatry service at St Andrew’s Healthcare.
How do you approach the care and support of older people in a neuropsychiatric service?
It’s important when working with and supporting older adults with mental health problems to consider how their organic and functional illnesses intertwine and how we progress them in their pathway at St Andrew’s and onward into the community. Connections with the patient’s family are also key so we also need to make sure we work to maintain those links whilst offering support to family members too.
We have a lot of our patients who are living with dementia and obviously communication with those who are caring for them is a tricky challenge sometimes and making sure that their voices are heard. We have multiple methods do that including our advocacy services, but also our staff are really experienced and skilled in making sure that the patient’s voice is heard.
How do we support people living with dementia and complex needs?
In 2020, we opened the Lowther village. The Lowther village was very much a critical part of our ability to deliver the best care for patients who are living with dementia and other complex progressive neurological conditions such as Huntington’s disease.
The dementia village concept comes from the Netherlands, where the key area of focus is making sure that patients are able to experience familiar activities throughout their journey with dementia and that they are able to link with the community, and that’s what we try to do. Our aim is to make sure that patients have the least possibility of feeling like they are in an inpatient setting and that includes people who are on Mental Health Act sections and Deprivation of Liberty Safeguards (DoLS).
What key interventions do you use when working with people living with dementia?
When somebody comes to us, we carry out a comprehensive multidisciplinary assessment that is the basis of their care and treatment.
An individual might require specific psychological therapies and that may include things like reminiscence therapy, individual sessions to look at what their actual cognitive impairment is meaning for them on a day to day basis and we will use tools such as life story work.
One of the key things we will look at when an individual comes to us is what activities and supports are going to help them through their journey, and that will include activities within the unit, but it also may include activities within our grounds and also further afield in the community.
The third intervention is obviously in terms of our medical support, and we have a full complement of doctors, a responsible clinician, a geriatrician who works alongside us and also our specialty doctors and the medical team who look at the treatments we’re offering and make sure that is the most holistic approach to that individual’s care.
Having worked across a number of organisations what do you think makes St Andrew’s different?
What makes St Andrew’s different is that the culture and the organisation are geared to deliver care to very complex patients who come to us. The challenge to us is that we need to be able to demonstrate we can meet the complex care needs of our patients and ensure their journey is delivered in the best possible way and that we maintain our links with the carers and family for that patient. St Andrew’s does that incredibly well, and it does it holistically and in some ways, effortlessly. So building on that is a key area I think within the neuropsychiatry division and also within the charity as a whole.
Parul Shah, consultant geriatrician
My name is Parul Shah, I’m a consultant geriatrician, and I joined the St Andrew’s neuropsychiatry multi-disciplinary team in February 2021.
As a consultant geriatrician, what is your role within the neuropsychiatry team at St Andrew’s?
My role as a consultant geriatrician within the team is to pick up on the subtleties of medical issues amongst our older adult cohort of patients and implement proactive management of their conditions so that patients don’t deteriorate any further with their physical health, reducing visits to acute hospitals and improving their safety whilst they are in our care here.
What are some of the key areas of focus for you with St Andrew’s neuropsychiatric service?
One of my key areas of focus is to improve the overall strategy for older people’s health within the neuropsychiatry service with a particular emphasis on identifying frailty. Older people are often living with multiple conditions, and as they physically decline people become frailer, if we identify this and are aware of increasing frailty we can put approaches into practice such as exercise programmes and lifestyle changes that may prevent people’s physical health deteriorating.
Sometimes our patients exhibit very advanced stages of frailty, and then we need to recognise that they may be approaching end of life and that maintaining their quality of life is of prime importance, rather than necessarily focusing on physical health care interventions.
So I think that’s one of my main aims; to provide comprehensive assessments to older patients and identify why they’re getting frailer. If there are no reversible factors we then need to think about how to make them more comfortable and make the right decisions for them in their best interest by involving them.
To find out more about the St Andrew’s neuropsychiatry service visit: Neuropsychiatry services » St Andrew’s Healthcare (stah.org)
The impact of stress on sleep
Dr David Lee at Sleep Unlimited offers advice on how to reduce stress and improve sleep
In response to acute stress, our body produces adrenaline, to help us with the fight or flight response.
When our body perceives there is an immediate threat to our lives, this activates our Sympathetic Nervous System (SNS) to increase our heart rate, respiratory rate, stop non-essential functions such as digestion and produce stress hormones.
During acute stress you may experience issues falling asleep and entering the restorative sleep stage as your body believes your life is in danger and so prevents you from entering a deep sleep in case you need to fight or flee during the night.
Once the threat has diminished the Parasympathetic Nervous System (PNS) is activated to lower our heart rate, respiratory rate and stop the production of stress hormones.
Evolutionarily this response was useful as we had to fight for survival if, for example, a bear was going to attack us. However, now our stressors tend to be due to relationships, financial stresses, or work-related stress. Things we are unable to run from, which can cause long term stress and SNS dominance.
Long term stress increases our cortisol production. Cortisol is normally at its highest peak in the morning to help us wake up, get out of bed, and have enough energy for the day. Levels of cortisol steadily decrease during the day, reaching its lowest point at around 10pm. This is so we are relaxed and able to fall asleep.
When cortisol levels are low, the PNS is activated during sleep, and we enter the restorative period of sleep. Cortisol levels start to slowly rise again at around 2am. If you are experiencing long-term stress, you may wake up at around 2am/3am as cortisol levels are already high.
To help reduce stress, you need to allow your body to feel safe. Here are some tips to help reduce stress and improve sleep:
- Stick to a good sleep routine but try to go to bed earlier rather than later. If we are constantly stressed the PNS system may only be dominant during times we are asleep. As PNS is only dominant until around 2am, going to bed around 10pm will provide you enough time to rest and restore.
- In times of acute stress, exercise is important, so we move our bodies as if we are acting upon the fight or flight response. However, in terms of long-term stress more restorative exercise, such as yoga, may be helpful as this activates our PNS. High-intensity exercise activates our SNS as it increases our heart rate and respiratory rate, so try to incorporate restorative exercises into your routine as well. Remember exercise outside in the morning is better as it increases melatonin production for release later in the day to help you fall asleep.
- Try deep belly breathing when you are feeling stressed to helps you to feel relaxed. When we are stressed, we tend to breathe short quick breaths from our chest instead of long deep breaths from our stomach.
- Allocate time during the day to write down your worries and your to-do list as this will prevent you from worrying about them as you try to fall asleep.
- Try to reduce caffeine intake. When we do not enter the restorative stage of sleep, we can wake up feeling unrefreshed and groggy, this can cause us to make a cup of coffee to increase our energy. However, caffeine also increases cortisol so try to reduce the amount of caffeine you consume, at least try to stop caffeine intake after lunchtime as this can increase difficulty in falling asleep. If you improve your sleep practices you are likely to feel refreshed in the morning, making it easier to reduce your caffeine intake.
- Avoiding screens and working in the 2 hours before bed allows us to wind down and help us to switch from SNS to PNS. If we engage in work or see something on social media that causes our stress levels to rise, then this may cause us difficulty falling asleep.
* Dr David Lee BSc PhD CertEd CPsychol AFBPsS CSci is clinical director at Sleep Unlimited
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