Those families already entrenched in the care system may be wondering at the speed with which the Independent Review Panel appeal took place, watching with feelings ranging from bemusement to outright rage at a portrayal of how to access NHS continuing healthcare that is completely at odds with their own experiences.
For many clients’ that we represent ‘the system’ dictates the nature of long term care rather than an individual’s needs. Time pressures relating to hospital discharge, the limited availability of affordable care services and the pressure to make life changing decisions quickly so as not to cause ‘trouble’ or worse still ‘delays’ fuels family stress and guilt.
The circumstances facing Jenny and her Mum Mary in the program are sadly not unusual. In the past month alone we have represented clients in order to:
- Secure a care home place that doesn’t require a ‘third party top up’
- Challenge cuts to packages of care
- Ensure that individual’s can be discharged to their homes, rather than a care home
- Challenged access to NHS assessments for those in the community
- Negotiate, mediate and complain about services
A lack of joined up information for families and those needing care is a huge stumbling block for those we represent. This has meant that the focus of our pro bono work is delivering training and resources to charities and the third sector to give them the tools to work with and advocate for their clients.
In social care, the Care Act 2014 provides a sound framework for assessing and delivering care and support to those who need it and their carers. However, the financial pressures on local authorities has led to a reactionary focus on basic, urgent needs to the detriment of quality of life, meaningful care planning and flexible care provision. Legal duties to provide information and advice are given a passing thought and minimal resources. After all, people armed with information are more likely to challenge. It is perhaps not surprising that complaints about Adult Social Care services to the Local Government and Social Care Ombudsman are upheld in over 60% of cases, and that the Ombudsman has recently highlighted a worrying trend of systemic breaches of legislation rather than one-off errors.
The Mental Capacity Act (2005) is vitally important in ensuring that adults with cognitive issues affecting their ability to make decisions are supported and represented. But enabling someone takes time and resources. For many families that we represent the legislation is used more as a sword than a shield with an implied threat that health and social care can do what they want lurking behind seemingly innocuous questions such as “..well do you have power of attorney?”
And lastly to health. Everyone agrees (more or less) that the NHS provides world class acute and primary health services but when it comes to arranging and funding longer term care those engaging with many Clinical Commissioning Groups (CCGs - who have responsibility for NHS continuing healthcare funding and Funded Nursing Care contributions) find them inaccessible and dismissive, with their engagement with families that borders on contempt.
That there is a stark difference in attitude between local authorities and CCG’s is reflected in their respective Ombudsmen. Local authorities are held to account by the Local Government and Social Care Ombudsman. Its work is transparent and it publishes complaint decisions weekly and special reports to provide advice and to tackle systemic issues that it finds. You may not agree with the outcome of your complaint, but you will be listened to, and reasons for any decision are clear. The Parliamentary and Health Service Ombudsman is however, opaque. The latest decisions published on their website are those made back in 2015. There are far fewer complaints noted in their annual review – possibly because every effort is made to refer you back to the CCG to resolve. It gives the NHS wide leeway, especially in NHS continuing healthcare, to take its time in dealing with retrospective claims: that people went without vital care funding is not a priority.
All of this is a roundabout way of saying that navigating the care system is a bit like high stakes snakes and ladders: Eligible for CHC funding? Climb the ladder. Funding then withdrawn? Slide down the snake…And it’s not only families that are feeling the strain, care providers are also being squeezed to do more, with reducing resources. In these Brexit dominated times, the green paper addressing social care is kicked into the long grass, as are people’s rights and freedoms.
By Louise Courtney