Dementia Support Line
Real stories
'The Government must address the state of social care after the pandemic' - Philip’s story
Philip, who lives in London, regularly visits his mum, Sylvia, in her Lancaster care home over 250 miles away. Since coronavirus has made these visits impossible, he feels frustrated that social care has not been a priority for the Government.
Since the new lockdown measures, Mum’s nursing home has been very good at helping us to maintain contact. They have put in place a system of being able to book Skype slots, which is greatly appreciated.
But as many others in the same position will understand, Skype is not the same as a visit.
Naturally, the biggest worry for my sister and I is our mum being infected with coronavirus. She has multiple health issues, including Alzheimer’s disease, which makes her very vulnerable.
The Government’s promise to increase protective measures and strategies really does make all the difference. It shows that she, and others living with dementia in care homes, still matter.
We were also concerned when my sister was told by the care home manager that we wouldn’t be able to see our mum if she fell ill during this time. This goes against Government advice to not allow anyone to die alone or without their family by their side.
Slow to react
I have been following the Government’s response to coronavirus and can’t help but feel the social care sector was not prioritised.
It was only when care homes and deaths in them were flagged up by the media and organisations like Alzheimer’s Society that the Government started to acknowledge issues relating to the sector.
Both residents and staff in the social care sector, until recently, have not had priority access to testing or Personal Protective Equipment.
It seems to me that social care and the families who rely on it are never prioritised without a fight.
It is clear that this country, along with every other country, is facing a most unprecedented peacetime challenge. I understand it is hard for the Government to know what the correct course of action is. Reassuringly they have ensured the NHS has not been overwhelmed. The rapid opening of the Nightingale hospitals was impressive, and the package of aid to businesses and laid off workers is supportive.
That said, I do feel our Government should have shown more humility when things have not gone right. Testing and PPE have not been rolled out quickly enough, and the social care sector, which is full of those people most vulnerable to COVID-19, was not focussed on early enough.
I am pleased the pace has now changed and I hope this highlights to Government that they absolutely must start to address the state of the social care system and its value to the wider community when this is all over.
Seeing the impact
While not as quickly as it should have been, I am grateful the Government is now showing the social care system—and the thousands of people affected by dementia who rely on it—the care and attention they deserve.
With the number of COVID-19 related deaths in care homes now being published in a timely manner, the country can understand and address the full extent of the impact of the virus on the social care sector.
That is why I supported Alzheimer’s Society’s call for the publication of daily COVID-19 related deaths in care homes. Without this data, the Government would be unable to take steps to truly understand the impact of the virus in social care, and we would continue to lose too many people unnecessarily.
Learning the lessons of coronavirus
I would like to think that the recent focus on care homes in the media will make the Government focus on fixing social care in the long-term. The cross-party talks during the pandemic are a good basis for working together to move social care forward in the future.
Preparedness for a major health issue should be a prime criterion in future CQC (Care Quality Comission) inspections. That is the number one lesson that senior members of Government who are responsible for health and social care must take away from this. This, plus the deleting of the term ‘unskilled’ for describing care and other key workers.
We have a Department for Health and Social Care, let this be an example of why working together will show huge difference to saving lives.
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Marcelline Russell
saysMy mum has been in her care home for several years now. The care home had several cases of COVID but are free of the virus now. I had a phone call from the Manager of the care home to say that I could visit mum , in the garden wearing PPE and from a safe distance. I then get another phone call to say the visit had been cancelled as the home are waiting for government guidelines. I am so disappointed. When will the government review the current guidelines. We need to see our loved ones before they don’t recognise us anymore.
T
Christina thorpe
saysMy dear husband in a care home he is crying out for me we need to see our love ones my not get to see them this year as things are going we are married do we not have rights to see each other I have said I would if they wish me to put on a mask as the cares are but do need to hug hemwe do not no how long they have left do we
Peter Garside
saysThanks for your time writing this Philip. I have been campaigning for the last 4 years to get fair treatment for people with Primary Health needs & not coping well enough in their own homes. I nursed my late Wife Pauline who had Alzheimer's Disease & could not manage on my own after several years. I then discovered that NHS had invented Continuing Healthcare specifically to finance private care costs provided the situation was "complex". Anyone who has experience of this health condition will know life gets very complex eventually.
Unfortunately NHS appear to keep this valuable health benefit confidential , & seem to prefer people to block Hospital beds at 5 times the weekly cost rather than pay for them to be nursed in their own homes, or in a Nursing Home if required. There needs to be an independent review of our NHS finances & efficiency asap.
I have always thought NHS was perfect until I had personal experience, & discovered them to be a huge bureaucracy lacking in basic business efficiency. I perused them after they refused to provide help when at the end of my tether I begged for assistance.
I won my Appeal & got the cost of help backdated to the date of my claim. When agreed the service was excellent & professionally handled.
Following the death of my Wife Pauline I launched a website to help people in a similar position to myself. It has had huge interest & I hope many thousands of people have secured their entitlements. Its what we paid our taxes to obtain if help was required, & unlike Social Care its not means tested.
Following the Coronavirus pandemic I was interested to read that NHS did a wholesale clearance of patients in hospital into the community & local Nursing Homes. I believe around 30000 people may have been involved ! This was in the expectation the beds would be required as the pandemic took hold. As we all know at Easter around half of hospital beds were empty & the additional temporary hospitals not required. How many of these people were already infected & have since infected others ? I hope an independent review of NHS will investigate & report on this matter urgently. Social Care should be given equal status to NHS as its healthcare. Instead they were ignored until it was too late & the scandalous death rates occurred. A Government Paper on the subject of Social Care is several years overdue.
My website is at https://continuinghealthcare.wordpress.com/
Best wishes. Peter Garside
Anonymous
saysHi there, Peter - good to hear from you again. We hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
We recommend visiting our page on 'Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and downloading our free booklet for further information.
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Alzheimer's Society blog team
Louise Tonks
saysI have been caring for my mother in my own home during this time. Home carers are invisible, yet the mental and physical strain is unimaginable. This is when home carers need more support, not less. Things must change.
Angela
saysMy Mum has tested positive as the whole of the home were tested. Mum has had Dementia 13 yrs had a heart condition, asthma but had no symptoms. We can’t visit or see her or support in anyway. This is tough, care workers weren’t tested early enough. Social care should be held in the same esteem as NHS workers -
Sarah
saysTotally agree with what everyone as said I work in the community we've not had a mention but that said I haven't got any clients with signs touch wood
Take care everyone Sarah
SnejanaDobreva
saysA very well written article! My husband and I both lost our mothers within a few months of each other. The covid-19 situation would have made it very hard for us to offer support to our elderly relatives and we are actually glad our mums didn’t die during the pandemic. This government isn’t treating the issues in social care and care homes seriously enough. We find this tragic, if we are a civilised country our beloved elderly shouldn’t be sacrificed this way.
JULIE
saysI totally agree with you. My father had Alzheimers and had a fall at his care home and was admitted to hospital as a result of 12 broken ribs. The trauma exacerbated his Alzheimers and he djed in hospital of advanced Alzheimers . The nursing care in the hospital was very good , the home could have prevented the fall. I am so sad.
The social care system is so difficult to navigate and know which home is suitable for Alzheimers patients.
I miss dad terribly and feel that it would have been harder if he had no one to visit as the situation is now.
mark harrison
saysDon't forget your .prime minister said on his first day in the job said they had a plan and it would be acted upon. If action is not taken now on funding the NHS and Social Care, it will never happen. Age and care is not about politics, it's dignity and embracing the value of another human being
Sarah Brown
saysMy husband died of the Coronavirus in his care home in April I do not blame the care home as the Care was excellent, I blame the government who did not test the carers and nurses in the care homes was this because a large section of csre home residents are over 70 . They were the forgotten people who had served their country well and deserved better treatment,
Michael Sumsion
saysCouldn’t agree more.
Suzanne
saysVery well put