Healthwatch Kirklees has worked in conjunction with the Safeguarding Adults Board in Kirklees to review 4 recommendations listed under the Safeguarding Adults Review Action Plan that focuses on improving Kirklees wide services so they are safer and more responsive for people with dementia.
To complete this review, Healthwatch Kirklees staff and volunteers actively sought feedback about the experiences of people with dementia and their carers. Their feedback was about the information and advice they had received; support that they were getting from the Council and different NHS organisations; advice they had received about housing options, and whether they were involved care planning. This feedback was gathered in person at activity and support groups and through an online survey. Staff and volunteers from Healthwatch Kirklees also did online research and mystery shopping activities to put themselves in the position of being a carer for someone with dementia, trying to find out answers to common questions.
Most of the feedback that came from carers was provided by people who have been caring for someone with dementia for over 2 years. Although their involvement with social care services may be more extensive now, their initial approach to Gateway to Care, and researching for information would have taken place before the Safeguarding Adults Review.
It’s important to say that caring for someone with dementia is a huge and life-changing responsibility which many people take on entirely willingly. Many of the family members and friends involved in caring for someone with dementia do not see themselves as a “carer”, instead they are a husband, wife, son, daughter, friend, and they are simply doing “the right thing” by the person they care for.
- Carers value the support that they get from voluntary sector services, but feel they face more challenges when seeking support from the local authority and NHS
- Being a carer for someone with dementia can be very challenging. There is a feeling amongst carers that the services provided by the local authority, NHS and voluntary sector should help with those challenges, making the process of caring easier, but that this isn’t happening in all cases.
- Voluntary sector support services for people with dementia and their carers received almost universally positive feedback, especially for Alzheimer’s Society and Making Space. They felt that the staff were welcoming and the environments were supportive.
- The carers also appreciated the flexibility provided by the voluntary sector services, which were primarily drop-in sessions, where you didn’t lose your place if you didn’t attend. They needed this as the needs of the person that they care for are constantly fluctuating, meaning they can’t always consistently be involved in something.
- Carers feel they have to be willing to push hard to get the services and support that they need from Kirklees Council. This requires a great deal of confidence and personal resilience which carers can sometimes lack due to the overwhelming nature of their caring responsibility.
- There is wealth of information about dementia, support and services available, but people struggle to navigate it
- There is a lot of very useful information about dementia and support for people with dementia available through online resources and voluntary sector support services. People were less positive about the information they received from Gateway to Care and NHS services than they were about other information channels, such as the Alzheimer’s Society and Making Space.
- Carers and people with dementia need to be actively signposted to this information, as it is not always easy to start the search for information or support.
- Carers like to be able to choose the means of accessing that information, with some appreciating the good quality online resources, others wanting to be able to ask the questions of individuals with a high level of knowledge of dementia, and other people wanting to read printed materials.
- The volume of information about dementia and the support available can be overwhelming and confusing, and people would like to be guided through this to the most appropriate resources or information for them, especially during a period of crisis. It can be very time-consuming to review a large volume of information to find what you need, and if someone is seeking answers because the situation has changed or they are dealing with challenging behaviour, then there isn’t always time to do this.
- The Housing Action Plan is a useful resource for information about housing that is personalised to the individual’s situation, however, helpful details in the plan can be overlooked, because applying for housing with Kirklees Council is lengthy process and people cannot dedicate time to reviewing the information.
- The online assessment for the Housing Action Plan is not fully accessible; those people with low levels of literacy, who do not understand English well or who are not experienced in using computers all face barriers with completing the online forms. These difficulties are also faced by these people when they are searching for information about dementia and available support.
- Details of someone’s medical history are not requested for the Housing Action Plan assessment, so details of support available because someone has dementia are not always apparent in the action plan.
- After receiving a diagnosis of dementia, people are being referred to their GP for ongoing support. In many cases, people felt that this wasn’t working for them
- The path of care for someone who has received a diagnosis through Memory Services is often to be referred by their GP, rather than a specialist in dementia. For many carers, this was considered to be ineffective, as the GP did not know enough about dementia and the support available to offer high quality care.
- Carers had similar concerns to the wider population about accessing GP services if something required immediate attention, particularly as the process of arranging an appointment and attending would present more challenges for a carer supporting someone with dementia.
- A key area that carers would like lead professionals to be involved with is planning for difficult situation and complications occurring in the future, but don’t feel that this is happening currently.
- People don’t have a clear understanding of what a care coordinator or lead professional is, and aren’t clear how that professional should be involved. Often carers would like a named professional involved in supporting the person they care for but feel this is lacking.
- When people receive different information from different organisations, or sometimes within organisations, they feel unsure of who they should approach and of the information they have been given
- Carers find the assessment and reassessment of eligibility for support from social care particularly challenging, stating that social workers often do not pay enough attention to the information that carers are sharing, which can lead to inappropriate or mismatched outcomes, with different professionals giving different advice, leading to an unclear picture.
- Communication between and within services linked to Kirklees Council is not of a high enough standard; carers face difficulties navigating misinformation from different agencies and a struggle to know where to turn to get an assessment and information.
- Some of the internal processes of the organisations involved in caring for someone with dementia are not helpful to a carer, such as the need for reassessment of eligibility for services, when dementia is a degenerative condition.
- A great deal is said about putting a person at the centre of the plan for their care, but in practice, carers feel that not enough is being done to put the needs of the person they care for first
- A great deal of focus is placed on putting a person at the centre of their care, and carers speak very highly of services that are accommodating, where criteria are not so specific and there is flexible access, because these fit around the nature of an ever changing condition. Too often carers feel that they are the people navigating an overcomplicated system where people aren’t put first.
- Carers are experts in the person they care for, so when they are planning care, carers are keen to get in to the mind-set of the person they care for, so they can get the most useful parts of what is available, but carers have been left feeling that this is not the priority for those assessing someone’s needs. When people are assessed by staff who do not know them, and do not retain any involvement with them, carers feel assessors cannot understand the full picture of what is going on in their lives. This feels to carers like an example of services fitting around professionals, not around service users.
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