"An Alzheimer's Disease Dementia patient and carer story."

I feel that I need an effective way to hold Health and Social Care bureaucrats to account?

My mother has had Alzheimer's disease dementia since 2014. In 2015 I stopped working to be her full time carer and did this until 2017 with the help of people in our local community who knew my mother. In March 2017 my mother went into The Newcastle upon Tyne Hospitals Foundation Trust (NUTH) and matters were taken out of my hands. The hospital subsequently decided that they could do no more for my mother and in May 2017 they discharged her to the care of Allan Court Care Home. All the staff and residents at the care home are brilliant and I have no concerns in that regard, they are providing my mum with excellent care, friendship and support.

I am trying to obtain some help with regard to her care home fees. The experiences my mother and I have had since 2017 I think have been shocking and a lesser person would have given up, but unfortunately for the organisations I have dealt with to date I am not prepared to let them get away with a failure to act in a what I think is a decent manner.

At the beginning of February 2017 my mother started to have problems with continence. I contacted our local GP surgery for assistance. Initially we were told that we would be unable to see a doctor and saw a nurse practitioner at the surgery. It was suggested that mum should just drink clear liquids and nothing else needed to be prescribed at this stage. Things did not improve and mum's condition deteriorated significantly during the weekend. After contacting NHS 111 they suggested we needed to speak to an out of hours GP and we were contacted on a Sunday by a GP. I spoke to the out of hours GP via a telephone consultation, the GP prescribed some Loperamide Hydrochloride to try and resolve, in part, mum's continence problems. The out of hours GP also suggested I contact our own GP surgery during the following week and request a referral to the District Nursing continence team (part of NUTH) in order that they could carry out a full continence assessment on my mother.

I contacted the GP surgery the following week and requested that mum be referred to the District Nursing Team in order that a specialist nurse could undertake a continence assessment and investigate what was causing these problems and what solutions could be offered. I encountered some reluctance in making a referral for a continence assessment and had to repeatedly make contact with our GP surgery and repeat what the out of hours GP had told me before a referral was actually made. In the interim I purchased adult nappies from Tesco for my mother in order to try to manage the increasingly concerning problems she was experiencing. Despite my best efforts matters were not resolved in a satisfactory manner and in early March my mother fell in the bathroom whilst trying to get off the toilet, resulting in a cut to the skin around her eye, bruising, and we subsequently discovered after she was taken with me by ambulance to the Royal Victoria Infirmary hospital (part of NUTH), the dislocation of her hip due to this fall.

My mother had elective hip replacement surgery in March 2017 at the Freeman Hospital (part of NUTH) and was then in the Freeman Hospital for two months. During the stay in hospital her dementia was much worse, she was unable to mobilise and became doubly incontinent. The doctors decided that she would not be safe at home as she could not mobilise without at least two trained carer's on hand for 24 hours per day and her dementia now needed specialist nursing care. At the beginning of May 2017 they moved my mother to Allan Court Care Home, Newcastle upon Tyne. The hospital has a contract with the care home to provide care for patient's such as my mother. My mother has settled in well and has made a number of good friends. The staff enjoy looking after my mother as she is pleasant and is cooperative with them when they are providing care for her. I visit my mother every other day and am confident that she is receiving good care.

Since April 2017 I have been trying to obtain some funding for my mother to help with the care home fees of £600 per week plus nursing fees that are payable by my mother due to her not qualifying for any assistance from Newcastle City Council (NCC). My efforts have ensured that my mother's Attendance Allowance has been reinstated and she has received a retrospective repayment of previously overpaid council tax, as she should have been considered as a person with severe mental incapacity some time ago. I have also managed to obtain some funding from the Newcastle Gateshead Clinical Commissioning Group (NGCCG) with regard to the nursing fee element of my mother's care, but am still trying to obtain some funding regarding the £600 per week care home fees.

On the negative side the Department of Work and Pensions (DWP) reduced mum's winter fuel allowance from £300 to £150 because she was considered as living in a residence (a care home) where at least one other person was in receipt of the higher rate winter fuel allowance (for people over 80). This is a care home, its full of people over 80! They have also wrote to me stating I am not entitled to Universal Credit from March 2017 and on this basis I receive no assistance from the state. I spoke to them about this and I've been told to come back to the DWP once I meet the conditions for receiving Universal Credit.

I have had numerous telephone conversations and meetings with representatives from NCC, NGCCG, NUTH and my local MP has made numerous written representations to these and other bodies, the responses they have received in the main just seemed to be an attempt to fob them off. Despite all of this and my repeated written communications with numerous organisations, support groups and charities the funding question remains unresolved. I have made it clear to all concerned that I am not going to go away or give up in my efforts on behalf of my mother in obtaining at least some form of financial assistance for my mother's care fees of £600 per week.

I have been trying to find anybody working within the NHS, Social Care services or third party services who will assist me in resolving, even in part, the fact that my mother is being expected to pay £600 per week in care home fees after a Hip operation left her unable to mobilise. I feel that its the failure of the NHS to deal with her double incontinence together with worsening dementia made it unsafe for her to return to our home. I was told by hospital social workers what was going to happen to my mother and it was made clear by the medical staff looking after her during a meeting that she was a good candidate for NHS Continuing Healthcare funding (CHC) prior to discharge.

In this regard and independent to the medical staff caring for my mother I sought advice from within the hospital. I was told by a medical social worker that the CHC assessment would be evidenced based and the assessors would have full access to mum's medical records in this regard. I therefore set out to ensure that everything we had been told about my mother's conditions were documented on her hospital medical records. Whilst my mother was still in hospital I obtained the advice of a specialist dementia nurse who also had a background in CHC assessment.

Once my mother was discharged to the care of Allan Court Care Home on at the beginning of May 2017 we discovered that NGCCG appeared to be set up in such a manner as to deter families from obtaining a fair CHC assessment and rather than being set up to provide help and assistance it was going to do anything it could to avoid assisting my mother with the £600 per week care fees payable. The medical social worker from the hospital who had be involved throughout mum's stay said they would attend the CHC assessment meeting and would bring her hospital medical records with him. Neither the social worker concerned nor mum's hospital medical records were present at either of the two attempts the CCG has made to date to undertake a CHC assessment. Across numerous health and social care organisations we feel we've been lied to, manipulated and conned and it appears that no one cares! I am now making it my life's work to pursue this injustice, as if it is happening to us it is also happening to other people and families.

Early February 2018 I received a letter signed by a Senior member of the NGCCG. It indicated that NGCCG and the North of England Commissioning Support Unit (NECS), who work for NGCCG have invoked a Habitual Persistent Complaints process against myself, that the NGCCG/NECS has responded fully and informed me that the case has now been closed. There was reference to the CHC appeal outcome letter of November 2017. I never received this letter, so I contacted NGCCG and they emailed a copy. The letter does not provide substantive reasons for the appeal decision. It states that I can appeal against the decision to NHS England, but without substantive reasoning behind the NGCCG's decision, how am I supposed to take matters forward? This is the THIRD time that NGCCG/NECS have slipped up in this way regarding letters concerning funding. On this occasion it has taken the NGCCG/NECS over 10 weeks from the date a letter was produced/signed off and sent out to get it to me. The repeated delays that they have caused in resolving this matter by this kind of mismanagement is appalling. All matters resolved? I don't think so!!

I've been advised by some of the local NHS people to go out and find like minded groups whom I could express my concerns to. Presumably to distract myself from continuing to raise issues with the local NHS people I have concerns about! Some local NHS people have also suggested I should consider some from of 'talking therapy' to help me deal with the issues I keep raising. I think that the hope was that the talking therapy could help me stop asking the NHS for funding for my mother!

The NHS and wider public sector could do better as organisations by having a relevant organisation and a named senior person taking responsibility for all matters raised by patients and families instead of insisting it is nothing to do with you or indicating that you are unable to help any further.