Department of Health feedback re Care reforms

The Department of  Health is asking for feedback on care provision in the UK. I felt compelled as a service user to add my comments. Although my husband is supposed to be covered by the continuing nursing care regulations and therefore does not have to pay for social care, many of the issues regarding the quality and integration issues of the service provided are the same.

My background is in professional management having a MBA and having worked in engineering management in some of the most dangerous places in the world. I have been  my husbands ‘unpaid’ carer for the past 4 years. During which time I have developed care plans, risk assessments, and nursing standards knowledge. It has also been my misfortune to come up against the bureaucracy that is the NHS medical system in this country.  

I therefore submit my feedback as follows:-

1. Improving quality and developing the workforce

a.     Should there be a standard definition of quality in adult social care as quality can often be interpreted differently? What do we mean by it and how should it be defined? How could we use this definition to drive improvements in quality?

·         Yes there should be minimum standards that are tiered according the severity of needs of the user. Someone needs to develop a group of industry standards and guidelines like the rail industry has done that are available to all on line. People need training in all aspects of care even how to safely push a wheelchair. I have seen carers nearly tip people out having pushed someone down a steep slope. Any company setting up should have to sign up to the standards and agree to be audited against those standards. This would lead to nationally accredited training courses and standards. Care Companies could then concentrate on being staff provision agencies, rather than trying to be training organisations as well.  

b.    How could the approach to quality need to change as individuals increasingly fund or take responsibility for commissioning their own care? How could users themselves play a stronger role in determining the results that they experience and designing quality services that are integrated around their personal preferences?

·         This is a very difficult area. I feel that many individuals are not equipped with the necessary life skills to deal with all this entails, payroll, maintenance of own safety, staff recruitment etc. My idea above would make this a little easier as they could recruit individuals with certain recognised qualifications and use the bank of online standards and guidance to ensure that they were keeping within the law etc. Society needs to provide people specialising in setting up home care to help people trying to set up and fund their own care.

c.      How could we make quality the guiding principle for adult social care? Who is responsible and accountable for driving continuous quality improvement within a more integrated health and care system?

·         Even though I know social services are under-funded and under-valued in places in our society. This responsibility has to sit here. They need to start being more as an advocate of the vulnerable, ensuring that needs are met. They also need enforcement powers to push their local medical authorities where needs be. Social services need to develop two arms, the caring role and the enforcement of national standards of care.

d.    What is the right balance between a national and local approach to improving quality and developing the workforce? Which areas are best delivered at a national level?

·         Standards, guidelines and qualifications need to be made by a national level body, to drive up quality and make the care of the vulnerable the same standard whether you are in Penzance, Birmingham, London or anywhere else covered by this scheme. This will help with mobility of the workforce, recognition of caring as a well worth profession.  Delivery of need assessments and service execution need to be kept totally local but follow national standards. For example the assessment for qualification of NHS funded continuous care. Every local care agency should be aware of the mix of its potential client base, by the usual business marketing strategies and recruit accordingly the right mix of qualified people.

e.    How could we equip the workforce, volunteers and carers to respond to the challenges of improving quality and responding to growth in demand? How could we develop social care leadership capable of steering and delivering this?

·         Firstly develop the strategy. Then set up the national bodies with strong remits in the setting of standards. Train strategy leaders to go out and talk to Social workers, PCTS, Care Agencies, SHA’s, GPs, Care homes etc. Set a tight time frame to get all infrastructure in place, change the law where necessary re qualifications that all involved have to have to practice. Develop an on line documentation database. Develop audit tools. Employ a professional project / program manager to drive through the changes.

f.     How could we improve the mechanisms for users, carers and staff to raise concerns about the quality of care? How could we ensure that these concerns are addressed appropriately?

·         Give us someone independent to report to that we trust and who has the teeth and the time to investigate properly. Lower the social worker to client ratio. Need for a HSE type inspectorate that is feared but respected.

2. Increased personalisation and choice

a.     How could we change cultures, attitudes and behaviour among the social care workforce to ensure the benefits of personal budgets, including direct payments, are made available to everyone in receipt of community based social care? Are there particular client groups missing out on opportunities at the moment?

·         Those who qualify for NHS continuous care are left to whims of the local healthcare authority. We have had terrible problems with this, my husband’s care has not been of a nursing standard, nor continuous and getting someone to take on their duty of care is a nightmare as there is no one to go to enforce the law in a timely manner. We have had care agencies walk out on us with very little notice, provide people of so little quality that they were putting my husband in danger. So denying me my right to earn a living, and my husband his right to be cared for. The NHS has cost me £120k+ in lost earnings so far, the lost opportunity to spend some time with my dying grandmother and then I could not attend her funeral. Now I fight again to have the right to see my dying father.

·         Re changing cultures etc this is covered in my comments regarding national standards and training.

b.    What support or information do people need to become informed users and consumers of care, including brokerage services? How could people be helped to choose the service they want, which meets their needs and is safe too? How could better information be made available for people supported by public funds as well as those funding their own care?

·         Social services and GPs must play a pivotal role in this.

c.     How could the principles of greater personalisation be applied to people in residential care? Should this include, as the Law Commission recommends, direct payments being extended to people (supported by the state) living in residential accommodation? What are the opportunities, challenges and risks around this?

·         National standards for care should include all receiving care. National qualifications should include all staff, nurses aids in hospitals, care homes, and nursing homes. Licenses should detail which standards are applicable and correspond to staffing levels and competencies etc.

·         Direct payments scheme should be available to all, where ever possible. Many in nursing homes have legally appointed financial managers, extention of these duties.

d.    How could better progress be made in achieving a truly personalised approach which places outcomes that matter to people, their families and carers at its heart? What are the barriers? Who has responsibility and what needs to change, including on the legislative front?

·         Social workers need to visit their clients regularly and have the legal duty to do so, whether the client wants it or not for their own good. We have not seen ours for months she relies on emails and telephone conversations, even though she knows we are in a physically deteriorating position.

·         Need people in charge of the delivery of care services that have legal teeth to ensure carees get the medical help they need and are not left in the community without the support they need. Our case being one in point.

·         The medical system, when placing weighting on waiting lists for operations needs to take into account the home circumstances of the individual concerned. I have been doing dangerous, back breaking work for years now and no one cares.

·         The local people involved do not have a legal responsibility to provide a case management type service. This leads to each service passing the buck in complex multi agency cases. The GP defers to the consultants who defer to A&E and social services. No one has the responsibility to take charge for vulnerable people and find workable solutions.

3. Ensuring services are better integrated around people’s needs

1. What does ‘good’ look like? Where are there good practice-based examples of integrated services that support and enable better outcomes?
• Not seen anything good all bad experiences here in Peterborough.
2. Where should services be better integrated around patients, service users and carers – both within the NHS, and between the NHS and local government services, in particular social care (for example, better management of long term conditions, better care of older people, more effective handover of a person’s care from one part of the system to another, etc)?
• In our area this is a disaster. We have been left without adequate help in terms of medical supervision or care provision since I started to ask for help in May 2009. Everyone passes the buck. My husband comes under specialist care of a spinal injuries unit and the local services can’t cope with his specialist needs. Rehabilitation medicine in this country is of a third world standard unless you have the money to pay, as many a discharged soldier is finding out to their cost. People who do not have compensation pots and have on going long term conditions such as MS, Spinal injuries, MD have a very hard time in this country living up to their true potential, because the medical system patches them up and then leaves them to rot in the community with no physiotherapy, adequate OT or care.
• Provision of adequate quality accessible housing is also a national disgrace.
3. How can integrated services achieve better health, better care and better value for money?
• For one I would not be spending every day at the moment wondering if this will be the day when he gives up and takes that overdose he keeps talking of, or be the day his body finally gives up the fight against the constant pain. After all his medical people leaving him in the community without the help he needs, for so long.
4. What, if any, barriers to integration should be removed, and how can we incentivise better integration of services at all levels?
• In every case there needs to be one person who is personally responsible for delivery of the service. Responsible for and powerful enough to tie together all the different agencies involved. Every user should be able to give feedback to a central body who then if serious enough a failing be able to investigate in a timely manner. The failures we have experienced have been bordering on criminal neglect and have certainly infringed on mine and my husband’s human rights. We have not got the money to sue or the time to untangle the system to find out who is ultimately responsible, the system should do this for us.
5. Who needs to do what next to enable integration to be progressed in a pragmatic and achievable way?
• Use a case like ours to find the weaknesses in the current system. Learn from it.
6. How can innovation in integrated care be identified and nurtured?
• Can not comment as I have never seen this in action.

4. Supporting greater prevention and early intervention

1. What do good outcomes look like? Where is there practice-based evidence of interventions that support/enable these outcomes?
• Ask for regular feedback from users. Have a change champion in each region whose job it is to spread the word of good systems.
2. How could organisations across the NHS and local government, communities, social enterprises and other providers be encouraged and incentivised to work together and invest in prevention and early intervention including promoting health and wellbeing?
• Need to have a personal legal requirement to provide services. The same person who lets out a care contract must not have his/her performance measured against savings in an organisation. Personal performance measures needed to be weighted towards quality of delivery of service and not financial savings.
3. How could we change cultures and behaviour so that investment in prevention and early intervention is mainstream practice rather than relying on intervention at the point of crisis? How could we create mechanisms that pay by results/outcomes?
• Everyone involved needs to have personal performance measures that count towards career enhancement etc that are weighted towards prevention rather than crisis management.
4. How could individuals, families and communities be encouraged to take more responsibility for their health and wellbeing and to take action earlier in their lives to prevent or delay illness and loss of independence? How could we promote better health and wellbeing in society?
• Over the past years, media coverage and government campaigns have done a good job in this area. So just do more of the same.
5. How could innovation in prevention be encouraged, identified and nurtured?
• As it is now, through recognition of those suggesting it, campaigns etc.

5. Creating a more diverse and responsive care market

a.     How would you define the social care market? What are the different dimensions we need to consider when assessing the market (eg type of provision, client group, size of provider, market share)?

·         I would define it as an under regulated mess, run by amateurs for a totally profit motive.

b.    How could we make the market work more effectively including promoting growth, better information for commissioners (local authorities and individuals), improved quality and choice and innovation?

·         By making it more professional, and regulated. See my previous comments.

c.     Does there need to be further oversight of the care market, including measures to address provider failure? If so, what elements should this approach include, and who should do it?

·         See my comments in section 1. There needs to be recognised national standards , licensing system of staff and providers. There also needs to be an enforcement element built into social workers remits and an audit arm akin to the HSE Inspectorate.

d.    Looking to the future, what could be the impacts of wider reforms on the market? What possible effects would the following have on the market: the recommendations of the Dilnot Commission’s report, the roll out of personal budgets and direct payments, and the drive to improve quality and the workforce?

·         Unless the government acts to address most of the issues facing older and disabled people, they will end up on filth ridden work house type nursing homes of Dickensian proportions and / or our streets will be full of the sick and homeless, begging in the streets.

6. The role of the financial services sector in supporting users, carers and their families

a. In the current system, what are the main barriers to the development of financial products that help people to plan for and meet the costs of social care?
b. To what extent would the reforms recommended by the Commission on Funding of Care and Support overcome these barriers? What kinds of products could we see under such a system that would be attractive to individuals and the industry?
c. What else could the Government do to make it easier for people to plan financially for social care costs?
d. Would a more consistent system with nationally consistent eligibility criteria, portability of assessments and a more objective assessment process support the development of financial products? If so, how?
e. Would the reforms recommended by the Commission on Funding of Care and Support lead to an overall expansion of the financial services market in this area? How would this affect the wider economy?
f. What wider roles could the financial services industry play? For example, in:

I am not going to comment on this section as my knowledge in this area is too limited, may be highlighting the main problem!