"Lack of support for disabled patients and those with existing care needs"

I was recently  admitted to hospital, I have a care package at home due to disability and care needs.  I have rheumatoid and osteoarthritis, hypermobility.  My immune system is compromised when I have an infection and have to stop my rheumatology meds, meaning as the infection gets worse so also does my mobility.

I was admitted in severe pain with  Kidney stones/infection, I waited 17 hours for an ambulance then a further 2 outside the hospital not a good start.  On being admitted I was given a walking frame in a room where I was put in the bed furthest away from the toilet.  This was a real struggle.  There was no offer of support from staff with personal care, changing, toileting which I have at home. I was then moved to a different ward.

There was no change to the level of support, I got no offer of support with personal care and hygiene despite having severe diarrhoea due to IV antibiotics.  I am right handed and my canula was in my right hand.  I was expected to clean myself after toileting with the canula in the way, a task I cannot do at home without my carers help.  I became distressed and told a nurse of my struggle, they assisted on that occasion.  The information was not shared, so things remained the same. 

I overheard the staff talking about my not getting out of bed, suggesting I was lazy.  I called them out and explained due to severe lymphodema my legs need to be elevated at all time, if my legs are left down I lose feeling in my feet and am at risk of falling.  The chair at the bedside was (a) too small and (b) did not recline.  There was no apology or attempt in advance to actually speak to me, the patient, an intelligent woman well capable of explaining myself. 

I live alone so generally I am dependent on the good auspices of others to help out when I go into hospital. I was seen by the pharmacist, who assured me I would get all my home medications.  I have pain patches for my back and knees.  When I asked for these I was told they were not available and could my visitor who was already caring for my pet and visiting me, taking my laundry and bringing things I need go to my home and bring my patches from home.  Which she did.

I am also diabetic, I took my own insulin and testing equipment and tested my blood sugar myself.  When I ran out of insulin the staff again insisted my friend be sent to bring some from home again.  When I explained I did not have any, they did not get me any till the following morning, leaving me with no insulin for 5pm till 10.30 am.  I was astounded that in 24hours I was told twice the hospital did not have what I needed.

The daily routine on the ward was to test bloods before dinner so I could take right amount of insulin after I ate.  On my last day no one came before lunch to take blood sugar test, so without any option I had my meal and took my insulin, guestimating what I would need.  Later a nurse came round and asked to take my blood sugar, I laughed that surely this was pointless as I had already taken my insulin.  They told me someone forgot to do it before lunch and they were doing it now as they needed to have numbers to put down.

I was discharged at my own insistence later that day, although the consultant felt I needed another day or so for more IV antibiotics.  I pleaded that I get to come home with tablets instead.  

I can't understand why the hospital care cannot be more person centred, why patients' previous needs can not be taken into consideration and acted upon.  My hospital care/admissions in the past year have been the same, nothing changes.  Not that things cannot be changed but there appears to be no one taking on the challenge. This is to the detriment to the patient, I felt embarrassed, helpless, unsupported and uncared for. 

I have great carers at home where my needs are met, which they certainly were not in hospital.  Until things improve I'm opting for hospital at home rather than inpatient admission, opting only for admission as a last resort. 

As an ex medical professional, I am ashamed and disgusted in the current NHS where we appear to have lost the aspect of caring.  Modern nurses are great technicians but they are not nurses, in my view.  Nurses care about their patients, the individual person's needs and holistic wellbeing, they stand up for them and build rapport, they don't treat them like a number or a case study.