A recent Patient Opinion entry from a woman in Nottinghamshire gives us a good, if painful, indicator of where there needs to be system changes across health and social care (sometimes called “whole system change” in the jargon). The entry is titled “Patients needs not being met and very poor experience”, I advise that you view it before you read any further.
The daughter’s experience was one of a seemingly never-ending series of things going wrong in the care of her mother with dementia. It deserves an analysis of what would have to change in the future to achieve a better service.
At a local level what’s called “whole system change” in the NHS and social care is something that NHS England now expects local transformation bodies to take responsibility for. In Nottinghamshire there are three planning areas for these “transformation programmes” now underway:
- “The Bassetlaw Integrated Care Board -covering Bassetlaw CCG area;
- “The Better Together Transformation Programme” – covering the mid Nottinghamshire CCGs area;
- “The South Nottinghamshire Transformation Board” – covering the South Nottinghamshire CCGs area (now including Nottingham City)
Each of these bodies have the challenging job of “fundamentally reshaping the health and social care system over the next 5 years”. As I suggested in an earlier blog this can be seen as essentially a local response to a national problem of: (a) an increasing budget hole in NHS resources in the face of increasing health demand whilst, at the same time, children and adults social care budgets are being been reduced by Councils, and (b) needing a new initiative (after decades of patchy and relatively unsuccessful initiatives) to remedy the lack of joined-up services both within the NHS and between health and social care.
This patient story identifies at least seven areas I can identify which a successful transformation programme will need to tackle and resolve if patients and service users are to experience a better health and social care system. There may well be other areas I’ve missed
- Achieving Patient-centred care
The first observation is that this woman and her daughter have experienced poor care practice in a NHS Trust in-patient rehabilitation hospital for older people and also from the same Trust’s specialist mental health and treatment team. This may well have been a one-off occurrence. But the fact that it happened means that one of the transformation challenges is to create a health service that is increasingly “patient-centred” across all its services and with all staff. There is still much to be done.
- Upholding Carers’ rights
The daughter’s account of her meetings with health staff suggests that there was a lack of consideration of her as a carer – that is, her insights, knowledge and advice about her mother’s needs and personal likes and dislikes. On occasion there is bound to be a conflict of interest between carer and the cared-for person e.g where financial interests clash, or where there are relationship difficulties. But the new NHS Constitution aims to place patients and carers at the centre of decisions that affect them and the patient. The daughter in this case describes how, at the multi-disciplinary meeting, “Noone …. would listen to what we were saying …. I felt I was not listened to and it broke my heart”.
- Improving Hospital discharge
There is a question about how well hospitals achieve appropriate discharge arrangements, sometimes a complicated and a multi-agency process. In this Patient Opinion posting the daughter was told that the mother may have been discharged to a rehabilitation unit that had insufficient specialist dementia staff. Perhaps the right unit had had no beds at the time. One of the key challenges facing all transformation bodies is working out how to bring hospital systems closer to community health and social care systems to prevent patients falling through the net. Or, as the daughter says in the posting – “No wonder she is so bad as she has been moved 4 times in 10 weeks”.
- Effective transfer of some hospital functions to community health
Transformation bodies have to consider how and where hospital functions can be more sensibly and economically provided for by in the community by the health service. In this case the daughter’s experience was one where she felt that the specialist hospital based ward provided the best patient-centred care her mother experienced. This is one of the mental health services for older people wards that is currently being consulted on for closure with proposed replacement by community based specialist staff. This demonstrates how careful transformation planning has to be to ensure that patients and carers’ needs are met in an equivalent and satisfactory way by community services designed to replace hospital services.
- Better health and social care Information systems
In the social services department responsible in this case for the mental health assessment of her mother the daughter was not able to find out who had been allocated to do this work. She describes having to call 5 different offices before she was told that no social worker had yet been allocated. Improved information systems will be a vital part of any “fundamental reshaping of the health and social care system over the next 5 years”. This includes better information about the range of services available to service users and carers. In this case the daughter was asked by the ward staff to “go and look at residential homes”. How was she to do that? “We knew nothing and were just given a booklet!”
- Complicated complaints systems
If the daughter had chosen to complain about what happened, rather than post her dissatisfaction on Patient Opinion, she might have had to simultaneously complain to Nottingham University Hospitals Trust, Nottinghamshire Healthcare Trust and Nottinghamshire County Council. Going through one complaint process is burdensome and stressful enough for most service users. To have to navigate up to three in this instance would put off all but the most strong-willed of us.
Healthwatch England have recently identified a staggering 75 types of organisations in England having a role in complaints handling and support, from councils and CCGs locally to national regulators. The Parliamentary and Health Service Ombudsman has agreed with Healthwatch England “that the current complaints system is too complex”. Both are now working with the Department of Health to simplify and reform the complaints systems.
- Mental ill-health services as a “Cinderella” service?
The Secretary of State for Care and Support, MP Norman Lamb, recently lamented that: “It’s a bit of a cliché to say that mental health is the Cinderella service of the NHS but it’s essentially true”. In this posting the daughter reflected on how poor her mother’s care had been as compared to her father-in-law’s experience of physical ill-health services in the NHS. This is how she described it: “It just seems (in our case anyway) that mental health is not important. My father-in-law who recently passed away had a physical health problem and has had the best of care in comparison. It really is so unfair”
What next?
The three transformation boards in Nottinghamshire and Nottingham would do well to have a close look at this Patient Opinion posting. As the transformational plans begin to develop over the year ahead, they could be tested in terms of their ability to tackle the sorts of issues highlighted by the plight of the daughter and mother in this case. Getting mental health services right for older people is, after all, probably the most challenging of needs to the way health and social care services are organised.
The good news is that the Trust concerned is now looking into where things have gone wrong in their services for this particular family. Patient Opinion as a patient feedback system has proven effective. The three transformation bodies in Nottinghamshire and Nottingham, charged with this most difficult task of directing whole system change, are working hard to begin to address the big issues such as these.
If any readers have experiences of the health and social care system – both successes and/or weaknesses – within older people mental health services, we would be very interested in hearing your story at Healthwatch Nottinghamshire. Get in touch by visiting www.healthwatchnottinghamshire.co.uk or by phone on 0115 963 5179.
Joe Blogs 