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I, like many others, followed the tragic story of Kate Garraway’s husband Derek, during and in the aftermath of the coronavirus pandemic, as seen in the TV documentary entitled “Derek’s Story”.  The last episode recorded the events and emotions in play during the period running up to his death earlier this year.

It undoubtedly echoed the stories of so many of the families who contact me for advice about the care and support of a loved one. The observations she made were familiar, honest and real in equal measure.

In particular she spoke of the massive change in a relationship caused by significant disability against the backdrop of a loving marriage. She reminded us not to lose sight of the person within and to remember who they are despite the “new wrapper”.

She spoke of the impact on the whole family, particularly when there are children involved, and the importance of self care. She describes an inability to think ahead and rather a need to focus on the present.

Perhaps not surprisingly, given her professional background, she had established that 1:5 women age 55 – 59 are unpaid carers and she spoke of the huge demand this makes on their own physical and mental health needs. That’s not to forget the men out there who are also fulfilling the same role or indeed the children over the age of 5 who are playing a crucial part in the care arrangements of a family member.

She described the stress she felt, the sense that she was existing not living and the harsh reality of trying to achieve work life balance. But she also described “a different kind of love” and what a privilege it was to care for Derek who was of course at the centre of the entire series.

She offered an insight into how Derek was feeling; heart breakingly his feelings of failure when fighting against the odds. And feelings associated with dependency, that is, frustration, anger, fear, despair and agitation. I would add that these sentiments are also seen in the family carer, understandably so, and of course this doesn’t make them a bad person, it makes them human.

The program closed with her experiences of trying to access NHS Continuing Healthcare Funding (non means tested financial support from the NHS for individuals assessed as having a primary health need) and her observation of the severe financial crisis that so many ordinary families face trying to secure financial support towards the cost of the right care solution. This is a topic that is far from new, has far reaching consequences for older people and their families and the solution for which continues to be debated, proposed and then kicked into the long grass by consecutive governments of all political persuasions. This is without a doubt a cross party issue.

In Kate’s words “we need a system that catches us when we fall not one that catches us out”

I am a registered nurse and eldercare consultant supporting older people and their families to navigate the NHS and Social Services, to find the right care solution and to access all available financial support.

If you are supporting an older person either professionally or personally, I ask you:

Do you know who you should be speaking to and the questions you should be asking them ? Perhaps more importantly do you know what you should be able to expect in response?

Do you have the knowledge and the time to identify the right care option and to find the best provider of that option ?

Are you confident that you are in receipt of all available financial support from the state, bearing in mind that this is not all means tested ?

If the answer to any of these questions is “No” then please do get in touch so that I can address these and any other care related concerns you may have.

 

I have recently been contacted by two families each with the same scenario and wishing to achieve the same objective. That is, to have a “Plan B” in the event that one of the older couple suffers a sudden deterioration in their health or unexpectedly passes away.

Whilst none of us like to think about such things it is my experience that families can be greatly reassured by such a plan. There is frankly nothing worse than needing to react to a crisis, despite other matters going on in our lives, with no prior preparation for such an event. Families often use the term “constantly firefighting” when describing their situation to me, which is both exhausting and unlikely to achieve a sustainable or desirable outcome for the older person.

In both cases I met with the older couple, together with their concerned family members, in order to explore their medical conditions and the impact they were having on their ability and quality of life, to understand their personal wishes and to discuss a range of care options.

We discussed their home environment and steps that could be taken to maintain their safety and promote their independence, thereby reducing the risk falls.

We discussed measures that could be taken to help them maintain their health status, thereby reducing their risk of unexpected hospital admission.

Consideration was also given to their likely eligibility for financial support from the state towards the cost of care, not all of which is means tested.

My visit was supported by a detailed report letter setting out my advice and further information likely to be helpful to them moving forward. It also confirmed our agreed next steps, that is, that I should research and report on a selection of local care agencies and comfortable care homes for their future consideration.

They subsequently received a report of suitable options to consider for both respite and long term care.

Both families are now in a position where they know what the most suitable care options in their area are, based on health and care needs, personal criteria and budget and can establish contact and ultimately a relationship with them at pace that works for them, if indeed this is required.

If you require professional, friendly and individually tailored advice provided in person by Claire Edwards, please give her a call on 07415387129.

 

It has been my experience over the years that families who are already reeling from the loss of an older much loved family member all too often find themselves struggling to support themselves or a parent who finds themselves alone. This may be after many years of supporting each other emotionally, physically and financially and the full extent of that support in the latter years only comes to light following what may have been an unexpected death.

Immediately concerns are raised about how that support can be replaced at a time when further change can be so difficult to bear and during a period when there are so many other tasks and responsibilities to be fulfilled. This can place a significant strain on relationships within the family, particularly when it becomes necessary to make temporary arrangements to accommodate and provide care for the older person who may themselves want personal space and the familiarity of their own home.

Furthermore such an event can cause a dramatic change in the financial circumstances of the person left behind and understanding what financial support is available from the state can be essential in this circumstance.

I aim to provide a calm presence, sound advice and care solutions, working along side other involved professionals, such as solicitors, financial advisers and care providers as required.

 

As 2020 draws to a close I, like so many others, am reflecting on the experience of older people and their families during the Coronavirus pandemic.

Public services for older people have long been in crisis, with funding at the very heart of it.

Way back in January we were waiting expectantly for the outcome of yet another green paper seeking once more to address the question – how should long term care for older people be funded?

And then Coronavirus hit ! Inevitably the green paper has been kicked into the long grass whilst all efforts have focused on survival.

The Coronavirus Act directed NHS, Local Authorities and The Care Quality Commission to reconfigure services to save lives and protect the most vulnerable.

We have seen:

• Thousands of lives saved.
• The nation come together to clap for carers
• Captain Sir Tom Moore inspire the nation to get walking

But sadly we have also seen:

• Families unable to visit their loved ones as care homes strive to protect their residents from infection.
• Older people isolated in their own homes.
• Essential support services for older people and their carers in the community close.
• Interruption to non coronavirus virus healthcare services.
• The impact this has had on the nation’s physical and mental health.

I feel privileged to have been able to:

• Give clarity where there was doubt about hospital discharge process
• Find the right care solutions when this was uncertain
• Successfully challenge funding decisions by the NHS
• Listen and reassure when anxiety and doubt took hold
• Educate and inform via professional webinars

Thankfully the light is now at the end of the tunnel with the roll out of the much awaited vaccine and there is optimism that life might just start returning to normal during 2021.

The focus can then return to ensuring that older people receive quality care in an environment of their own choosing and are fairly assessed for the financial support that they may be entitled to.

Never before has independent care advice been more valuable and I thank my clients and professional contacts for putting their faith in me.

Happy Christmas to you all and, this year in particular, don’t let’s forget to focus on what we are blessed to have rather than what might have been.

 

During the Coronavirus crisis the NHS has and continues to save lives whilst the Local Authorities have and continue to provide an essential safety net to the most vulnerable.

Claire Edwards Eldercare Consultant provides an extra layer of support for older people and their families:

• Who have needed to accept essential short term care, funded and arranged for them by the NHS and Adult Social Care Teams, that they do not see as being the longer term solution.
• Who have lost one parent only to discover the extent to which that parent was supporting the other.
• Who prior to this crisis had recognised the vulnerabilities of an older relative but have put plans to find the right care solution on hold.
• Who are concerned about the cost of care for an older relative, either because the temporary public funding will soon come to an end and /or because their own ability to step in has been affected by the dramatic and unexpected changed in their own financial circumstances.

Claire Edwards Eldercare Consultant can help by:

• Conducting independent consultations and assessments to provide an opportunity to identify health and care needs, discuss a range of care options, to provide clarity during these uncertain times and to help inform decision making about next steps
• By individually researching the most suitable and sustainable long term care solution taking into account the most up to date government guidance and current practice around the provision of care during the Coronavirus crisis and beyond.
• Supporting older people and their families with their contact with NHS, Local Authorities and the Department of Work and Pensions to ensure they are aware of all available financial support and how it can be accessed.

Call me, Claire Edwards RN Eldercare Consultant on 07415387129.

Never before has independent care advice been more important, for both privately funded individuals and those dependent on the Local Authority for the funding of their care.

Exceptional demands are being made on our NHS and Adult Social Care Teams who, as always, are on the frontline when it comes to supporting older people and their families, often at a time of crisis. As an NHS trained nurse with many years hospital based experience, I applaud them unreservedly.

Inevitably it has become necessary for essential changes to be made to how services are delivered by both sectors and I give a brief summary of my understanding of these, together with their likely impact on older people and their families, below:

Adult Social Care

The Coronavirus Act 2020 became law last week and all main stream duties of Local Authorities as set out in the Care Act 2014 have been downgraded to powers, with the exception of ; where meeting needs is necessary to avoid a breach of the Human Rights Act.

This means that:

Many individuals may struggle to access care needs assessments and carer’s assessments, eligibility decisions and reviews for the foreseeable future leaving large numbers with unassessed and therefore unmet needs.

Family, other advocates and care providers may not necessarily be involved in new assessments.

There will be no requirement for Local Authorities to provide a written report following a care needs or carer’s assessment so accountability will be removed.

The principles of person centred care may be lost.

Temporary eligibility criteria for services may be set in such a way that makes them incredibly difficult to meet resulting in a huge level of unmet need amongst older people.

Unpaid carers will feel even more pressured to provide more support than they already are, alongside concerns about breaching guidance on social distancing and self-isolation.

Financial assessment, a pre-condition to a charge being agreed or paid may be delayed until after the crisis is over, though I should add that this will not in itself be an obstacle to services being provided.

The postponement of financial assessments whilst services continue to be delivered means that individuals may be put in a position where they have to accept a service that they will later be charged for without knowing what that charge will be, causing some individuals to decline services altogether.

This may cause conflict for the representatives of individuals who lack mental capacity, in particular concerned sons and daughters who are themselves under huge financial strain due to the crisis.

Hospital Discharges

Patients are understandably being discharged from much needed hospital beds earlier than ever, using the “discharge to assess” protocol.

Guidance to NHS staff states that patients must leave their acute hospital bed within an hour of the decision to discharge and the discharge lounge within two hours. It is the intention that “a leading healthcare professional” will visit patients who return to their own homes, on the same day as their discharge from hospital to arrange on going support services.

This means that :

A huge strain is being placed on local care agencies and community health staff

Pre-existing problems with the availability of care staff and the distribution of equipment to maintain independent and safety at home will be exacerbated.

There will be a rise in anxiety amongst older people and their families about accessing essential services.

Patients in need of residential care are likely to be denied choice in the rush to arrange “placement” at the earliest opportunity.

NHS Continuing Healthcare Assessments

CHC assessments, with the exception of Fast Track applications, are not currently being conducted until after the Covid 19 crisis, though 3 and 12 month reviews of funding already in place, and which can result in funds being withdrawn, may continue in some instances.

Requests to appeal a previous decision can be made but will not be acted on until after the crisis.

This means that:

There is going to be a massive backlog of NHS CHC Checklist and Decision Support Tool Assessments.

Where 3 and 12 month reviews of existing CHC arrangements are conducted, these are likely to take place without the option of genuine representation and may result in funding being withdrawn unfairly.

How Claire Edwards Eldercare Consultant can help

Continued provision of consultations and assessments by Telephone, Facetime, Skype or Zoom, so that independent, accurate and personalised advice and support can be given.

Liaison with Hospital, Adult Social Care Staff and Care Providers as required to support families and carers whilst suitable care arrangements are put in place.

Use of my expertise, knowledge and time to research and report on the most suitable care providers of home care and residential care to support informed choice and decision making.

Support understanding all aspects of care fees funding, for now and at the end of this crisis, for both clients dependent on Local Authority and those who are able to fund their own care, including assistance making successful applications for statutory funding where appropriate and accessing regulated financial advice where this is required.

Provision of emotional support to older people and their families through what has become a frightening time for so many.

Signposting to ancillary services and relevant helplines.

Essentially

Older people continue to live with multiple health conditions that impact on their quality of life, with or without coronavirus.

All the difficulties within our healthcare systems remain but with the added pressures of this far reaching infection.

Older people are more vulnerable than ever ( of both social isolation and the potentially serious consequence of infection ), huge demands are being made on our NHS staff and there is an inevitable knock on effect on Adult Social Care Services in the community.

Families need help navigating the new guidance set down by the Government, finding the right care solutions and accessing all available funding.

Care homes and care agencies continue to accept new clients and care still needs to be paid for.

If you are supporting an older person professionally or personally, this is the time to take individually tailored and flexibly delivered independent care advice.

Keep safe.

Claire

Don’t let’s forget that older people continue to live with multiple health conditions that impact on their ability and quality of life, with or without coronavirus.

All the difficulties within our health and social care systems remain but with the added pressures of this far reaching infection.

Older people are more vulnerable than ever (of both social isolation and the potentially serious consequences of infection), huge demands will be made on our NHS staff and there will be an inevitable knock on effect on Adult Social Care Services in the community.

Essentially families will still need help navigating the NHS and Adult Social Care Services, finding the right care solutions and accessing all available financial support.

If you are supporting an older person professionally or personally, this is the time to take individually tailored and flexibly delivered, independent care advice.

Do get in touch on 07415387129. I would welcome the opportunity to assist you.

Over the last few weeks I have had reason to reflect on what it is like to be dependent on others for care and support and what an eye opener it has been. I believe I have always shown empathy to my clients in need of support but there is nothing like losing your own independence (albeit for a short period in my case) to bring home the reality of what this means to the individual, particularly when long term care is required.

Don’t get me wrong, my family have been amazing in their endeavours to look after me and I suspect I haven’t been the easiest of patients to look after. However I now realise how easy it is for those providing care and support to “take over” with the very best of intentions to do as much as possible to help. On more than one occasion I have found myself saying “I have had a hip replacement not a brain injury” in order to re assert my right to make decisions about the support I receive.

A timely reminder that it is frustrating enough being dependent on others for practical tasks without adding to it by inadvertently assuming the role of decision maker too !