Didn’t get the help we needed … … …

My mum was 78 blind and deaf and disabled and died a few months ago 2016.  She had a tumour removed from her head and lost eyesight.  She was living in her bungalow independently and wanted to stay there.  But she was sent home from hospital after having her eye removed with no help at home offered, just a social services assessor for the blind coming who left saying she is a “difficult case” that he didn’t realise she was disabled and disappeared and didn’t notify anyone else so I had to move her in with me and my family as I didn’t know I could have a “care package” and we looked after her for 3 years.  I don’t know where to start to tell you.


Care at Home and Social Services.

Caring needs on a daughter can be demanding, and mum felt a burden and she didn’t want to be, she wanted to be in her own home and she wanted me to put my family first.  I called social services for help, they just said, sell her bungalow and go into a care home.  She did not want this, they did not offer a care package, only day centres to give me a break.


She was admitted to Broomfield and as she overtook her antidepressant tablets by mistake, and she was allocated a mental health worker because of this, finally we got some help and advice.  This should have happened long before when I asked for it, he said he could see no reason why she could not live in her bungalow, with care, which is what she wanted, so he sorted out a care package then, so now we had a care package.  This was with xxxxxxxxx and 4 times a day visits.  Little did I know it was going to be crap.


Missed calls resulting in medication not being given, mum not being fed and watered, she ended up some days living on biscuits as she could not prepare her own food.  I did her washing and ironing  etc and they only needed to do a bit of housework/tidying, but they used to stand in the kitchen and not do anything on their mobile phones as mum could not see them.  The house was not kept clean, things not tidied up, things would not be moved to the side and get in mum’s way, dangerous hazards.


They were not good at doing her eye drops, some were only 17 or 18 years old, they couldn’t even cook asking mum “how long do I cook this for?”, or “I’ve never done an omelette how do I do that?” etc etc.  She ended up many times having meals according to the capabilites of the carers not what she wanted.


I heard sob stories about why they were late for calls, hoping mum would say “I’m alright,you run along” as older people do.  It happened all the time.  One call time would run into another and also they would make up time by taking off 10 mins off of each client’s call to catch up.


When I complained about things that were happening it just fell on deaf ears.  They really didn’t care in any shape or form.  There were 3 good carers but they left.  They were losing people and replacing them with people that seemed to have dragged off the street I think.  Some didn’t speak English also.


The care agency’s attitude was bad, they would ring me up and say “we can’t come out to mum today, can you go in and do it?”.  We were paying for a service and not getting it, what if I weren’t able to do it?  If she had received no breakfast or lunch call she would have had no help most of the day.  They had no system to say the carers had not turned up, unless there was a complaint, only then they would know.  I felt I couldn’t go out at weekends, or on holiday, I couldn’t go anywhere as I couldn’t be satisfied they would be turning up.  I had to be behind them all the time, not sure she had had her medication, or eaten, or drunk anything.


I went round every day  to have to check she was okay, she wanted me to spend time with my husband and children and not worry about her, but we were worried all the time.  That they would not turn up, because it happened all the time.    Young carers are not reliable, we need more older responsible carers not young kids who don’t fundamentally know the needs of the elderly and what the impact of not doing their job properly can be.  Mum constanly got  water infections through not getting enough to drink.


The care agency in the end did not want mum as a client, saying they couldn’t meet her needs, but all she needed was cooking food, eye drops, providing drinks, bringing some milk in now and again etc, why couldn’t they do that?  They also said they could not do 30 minutes time slots.  Everything comes down to budget – we were paying for a large proportion of this care.  Or was it because I was complaining about what was happening?


Eventually we got the care agency changed.  I must say that the second care company we had at home were fantastic.  The first one I wouldn’t trust to walk a dog.  The second company, Summer Care, had more consistency, regular carers.  If regular carers were ill one of the managers would even come out.


Care Home

She went into XXXXXXXXXXXXX XXXXXXXXXX care home in Chelmsford when I went on holiday for respite.  I chose it, it looked nice and posh and new.  Don’t always go on what something looks like, I didn’t know anything about care homes.  You don’t see it as it is when you are shown around.


They did not provide food she could eat, she was gluten intolerant.  We just had to pick “something” that was on the menu like a jacket potato, one carer brough in a gluten free cake out of her own pocket as she saw mum was not gettting adequate food often.  She couldn’t chew some of the food as mum had stroke like effects from the removal of her tumour and it affected down one side of her body.  They didn’t want to make her some thing she could eat.  They would say this is what we are cooking. Option 1 or 2 – or an omelette, she lived off omelette.  And jacket potates which she found very difficult to manage.


Staff were spoken to like dirt by management.  Morale was rock bottom.  They didn’t seem to care about medications, when and if they were given.



Broomfield.  Some parts were good, some atrocious.  Mum collapsed at home one day, and was taken to hospital.  The doctor tried 20 times to get blood out of frail mum.  I told him, no-one can ever do it, that it ends up mum having to have blood taken from her foot or neck.  He just didn’t listen.  She was screaming, get off me. There were needles and syringes everywhere, a mess.  Mum did not need to go through that.  Mum was clearly frail and ill, then we were told a million times she was dying and they would not resuscitate her.  They kept telling us they had put a Do Not Resusitate on her and we were told this in an unempathetic way over and over  again.  They did not say take us to a side room, or say it in any kind way.  It was awful.  Clearly it was a pathway of no medication, no fluids, they said this was beneficial to her, I feel they killed her.  They did not explain anything to us.  My husband had to ask “what is happening?”, we thought she had 6 months to live, they just said she had days.  They did not tell us anything until we asked.


If they had said this is your last chance to speak to your mum, instead of sedating her knowing after that she was not be able to communicate any more, I might have been able to speak to my mum before she died.  They didn’t.  A nice lady from palliative care then came, and said we could keep her here, or in a side room or have a bed and take her home even, or go into a hospice possibly.  I was so emotional I couldn’t think.  Next day I’d had time to think and wanted her to go to a hospice, they refused the very next day saying then she was too frail. I wanted her to die in peace but no, why did they say that the day before then?  That she could even come home and stay in bed?


A cleaner kept coming into the room as mum was dying because nurses hadn’t communicated not to.  She had to die in that room in the hospital.










Things That Need Improving:

  1. We need a sort of bible of what you are entitled to - people who can help you, an advocate, one port of call, something that gives you helpful no's, charity contacts etc. You don't find out what you are entitled to when you are ill, you just stumble across things.
  2. The way hospitals are run for example, I see lots of agency nurses not familiar with protocol, where things are etc, regular nurses might as well do the job themselves, there is no consistency with the nursing.
  3. Care at home - the whole things stinks. What can you say? Too many clients to see in a day, carers being phoned and asked regularly "can you fit one more in today?" Also keep carers within certain areas, it is a disorganised system, with them having to cover wide distances.





Date Experience Happened

2009 - 2015


Care In The Community