Where do we go from here?

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“…this is the price we pay for democracy. The majority get the services where the majority live. We get nothing…how is that fair? ” Family care giver August 2017. 

Currently the residents of the Peak Park are adjusting to the news that a number of community hospitals are closing the majority intermediate and respite beds. These hospitals are the sites of many memories for older people and more recently, often the places where a diagnosis of dementia is confirmed and follow up care provided. This blog represents the views of some of the families I have been in conversation with over the summer. As such they do not solely represent my views. Please also note that this study is not about the decisions which have been made to redesign local services since many of those were in the pipeline long before the study started. Nevertheless, the issues and outcomes of consultations with the community have been at the heart of many concerned families and providers of services.

There are a number of key issues which I wish to relay to readers of this blog. Firstly living in a rural and often remote location brings challenges which can, by the very nature of being less visible, render residents more vulnerable to changes in services than those who live in more urban areas. The capacity and flexibility to adapt to cuts in services are not as elastic as more urban centric areas. This relates to the infrastructure of the community, which I have mentioned in previous blogs. To recap these relate to the availability of a trained reliable workforce, ease of transport and travel across the region, digital connections (for telehealth and general communications), acceptability of service to differing communities and the range of services. These cannot be underestimated when considering changes to established services.

We have to remember that in National Parks there are also other infrastructure considerations. Building dedicated housing for older people and the availability of affordable venues for social groups and day care to meet are limited by laws about maintaining the remit of the National Parks. As such there are inevitable tensions between the needs of vulnerable residents who wish to remain in their locality and maintain their sense of belonging with the need to keep the Park as a place for the enjoyment of all that is tranquil and maintains the notion of countryside. Tranquility is fine and an aspiration for many including those who live in the Park. However, for residents of the Park, the current drive towards urban centric services, will generate less opportunities to engage with members of the local community and fosters a sense of disruption and anxiety among the most vulnerable. There is an emergent sense of frustration that upgraded local venues, such as village halls, are no longer affordable to local groups.  Local providers  are increasingly concerned about their futures. Day centres are one such provider.

Day centres may not be relevant to all but they provide an important service in the community. There may be the need for some “tweaks” and reconfiguration of the nuances of these but broadly they provide, at often minimal cost, an essential bridge for the most vulnerable people. These people will have not only dementia but also several other illnesses which require a highly skilled workforce to support and maintain. So what do they provide which cannot be duplicated in the thrust towards home care? Firstly their co-location with other key providers such as GPs, social worker teams and within the eye of the local community cannot be underestimated. The willingness of GPs to “nip across” to check on Mrs. M whilst she attends the day centre is built on mutual collaborations and established working relationships. The visibility of the day centres provide a reminder to those in the community that our older people are just that…Ours. Relationships, often over many years, are reciprocal in their nature. Families give what time and resources they can to helping raise funds for the Christmas outings and staff spend their spare time scouring markets for activity resources. People feel a sense of connection; we know that being with others is good for us in many ways. Being at home isolates and renders families invisible. Day centres also keep people in the community longer, despite their often high levels of need which are mostly on a par with those of nursing homes. As such core care, such as bathing, feeding, toileting and mobilising are all met. Subtle “keeping an eye” is often disregarded as none essential or even intrusive by those who decide the future of these services.It is good to know that Mrs. M will have her medication checks on time and in an environment where a professional can provide the necessary knowledge for the GP. It isn’t hard to see how these everyday actions are not only good for the financial spreadsheets but more importantly generate a sense of a safety net for providers and users. In short, these services run on a shoestring, yet provide so much for the local community which I doubt can be replicated in the models of home care. How much more could they do with adequate funding in their communities?

We need to accept that dementia is a progressive syndrome and as such is often compared to cancer by families. There is no cure for dementia: the best we can do is to at least strive towards providing the best personal care possible, regardless of the stage or presentation of the condition. Even those with identical types of dementia will experience differences in the characteristics of their dementia. All too often we expect families to travel along a linear pathway that is called the dementia journey. Let’s get rid of this notion. Dementia is a journey but so is life generally. Each journey is different, some treacherous in parts, some wonderfully content and stable. We need to have a broad range of responses in the shape of relevant and robust services, which can effectively respond to the changing needs of families. Some of these service models will be providing “traditional” types of care which currently seem to be seen as outdated and irrelevant. For some families these are essential and make the difference between permanent residential/nursing home care or continuing to live at home with day care. These services need to be enabled to talk to each other and collaborate with the priority being at all times the individuality of the person with dementia. Why is this so hard to achieve?

 

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