I write on behalf of 90 year old Mother with dementia and myself has her carer.  My mother is resident in Suffolk Coastal area and in receipt of social home care subsequently moving to Residential Care Home(s). I am my mother’s sole surviving child.  My younger siblings died many years ago; my brother took his own life and my sister who had cerebral palsy was deaf and partially sighted died the year later. 


Our experience of Adult Social Care has been mixed.  The social worker that was assigned to my Mother after she was diagnosed with mixed dementia was excellent and even though her hands were tied regarding the budget that was available for home carers and ancillary provision to enable my mother to remain in her own home for longer.  If it wasn’t for the fact that I filled in the gaps in care and ancillary provision I strongly believe that my mother would have had to enter Council supported Residential Care earlier than she did.  Our social worker was an excellent ongoing support.


My mother entered her first Care Home in 2017 after hospital doctors would not discharge my mother to her own home or my home due to her dementia.


I believe adult social care is not a streamlined process as the NHS.  I also believe that discharge from hospital to free up a hospital bed is the main concern and not enough time is given to matching the patient to the correct care home.


My mother was one of the lucky ones as she had me to advocate for her and in normal pre-pandemic times this was a stressful time after the pandemic this process was intensely stressful for all concerned.




As mentioned above my mother entered her “first” care home in 2017.  I believed that this care home suited my mother and her needs and my mother and I were very happy with the care home before the advent of Covid19. 


The pandemic’s invisible effect on unpaid carers has been written about many times over recent years. 


I was offered window visits and zoom calls, these do not work with people with dementia, even when guidance “relaxed” resulting in “visitors” wearing masks and full PPE this made a stressful situation much worse resulting in my hard of hearing mother in tears, not understanding why she was not allowed to be near me rather than over 2m away unable to hear.  

After a couple of horrendously stressful “visits”, shockingly I was left with no other option than to have no access to my mother from then on.  Sadly I was resigned to the fact that the next time I had a phone call from the care home it would probably be to tell me she had died.   Another example of the main family carer becoming invisible.  


The Care Home only called me when there was an emergency and in some cases when my Mother attended hospital I was not told of her attendance until she had returned back to the care home.  If I called the care home to ask how my mother was I would be told “she is fine”.  I felt that I was unimportant and that my Mother was now the property of the Care Home.  Invisible once again.   There are many examples of how little our right to family life was disregarded. 




The most shocking example of being an invisible carer was once the government guidance changed and “Essential Care Giver” “ECG” became a possibility for family carers in my position.


I informally asked the Care Home manager if I may be considered for ECG on three occasions over a period of three months on each occasion I was told that “your Mother doesn’t need you we do everything for her”.  After the third occasion on being refused I received a letter from the owner of the independent Care Home stating that my Mother was under notice of eviction due to no fault of her own but because I did not “trust” the Care home to care for my mother. 


Luckily my mother moved to an excellent care home in November 2021 a few weeks after receiving the notice of eviction. 


Social Workers were extremely supportive and shocked by the situation and tried to mediate in the first instance even though by this point I had in fact lost all trust with the Care Home.




Care Homes are not prisons, care home Residents are not inmates.  During the period of the pandemic I felt my mother was in prison because her human rights had been completely stripped away.  For someone who has no mental capacity to be left completely without anyone to advocate for them when that facility was available via me, is unbelievable and scary for the future for all of us.  My view of residential care homes has changed forever and I will always suggest that now and in the future anyone in my position should try their utmost to manage at home rather than risk a loved one being admitted into a “care” prison for the rest of their life.


Please note I did write to my MP Therese Coffey on a few occasions when I felt I needed help to navigate through the unfairness of the situation.  I could not also have survived without the support via Twitter of Rights for Residents and John’s Campaign.




26 May 2022