Positive Partnerships 2014
A report on the consultations undertaken in 2013 & 2114 as part of the development of this strategy
1. Consultation Format
The ‘formal’ consultation ran from 3rd March 2014 to 3rd June 2014.
The draft strategy had previously been ‘tested’ and expanded by an invited workshop of 45 key stakeholders.
Format consisted of the draft strategy and a questionnaire that invited comments on the strategy and an invitation to comment on any required future actions to ensure its implementation.
It was published on Hantsweb under ‘Have your say’ and emailed to 110 organisations and individuals in Hampshire with a request to make it widely available through their networks.
Methods of reply were by paper questionnaire (which could be returned by email) or a survey monkey questionnaire. There were only 14 replies by these methods.
In addition visits were made by this officer to existing meetings with such as Healthwatch, Personalisation Expert Panel, Disabled Peoples Voice Hampshire, Motor Neurone Disease Association, Progressive Supranuclear Palsy Association, Hampshire Neurological Alliance, The Hampshire CCG Group, Wessex Neuro Charities network, Hampshire Parent Carer Network, LD purple LIG, Audley’s Resource Centre and others.
At meetings people were invited to complete the statement often spoken by many – “Its disgraceful they should do something about it…..” and then they were asked – “what should ‘they’ – being Hampshire Adult Services – do about it?”
Internal to the Adult Services Department it was circulated via DMT and Area Directors, Team Briefing and the staff PD interest group. External distribution included District Councils, CCG’s, and CVS’s
2. Engagement
For the 1st 2 months there was very little response, probably due to the need for organisations to circulate through their networks. The test event at Wells Place had already indicated that the strategy would be well received and therefore replies might be limited.
The third month saw the growth in response primarily from meetings attended where a dialogue has been developed and which is continuing with further meetings being arranged through until September at present. There is little doubt face to face dialogue has been, and will continue to be, the most successful format for response.
3. Responses – this is not able to be provided in direct link to the chapters set out in the questionnaire as people chose to put forward what is most important to them. However all responses relate to the overall quality of life for people with a disability around which the strategy focuses, leading with the statement ‘Its about having a life, not just being alive.’
Thanks are due to John Evans for permission to share his Independent Living anniversary statement which is included at the front of the strategy.
Information & Advice - The primary response which occurred at nearly every meeting and in every written response is the difficulties people experience accessing information and advice across what are, to them, complex, and sometimes seemingly impenetrable, systems of information, advice, service and support.
Exploration of this issue at the meetings shows it ranges across health, social care, central government, national and local organisations with people not knowing where to start and what to ask.
The most common and valued source of information and guidance is often other people. It is also the case that people expect any one agency to provide all their information needs without them knowing what they are or who may actually provide a service.
It may be significant that for every information question this officer at meetings was asked, although he might not at the time know the answer, he was always able to find it when returning to the office. This indicates that the information people seek is already available via the internet and the issue for them is not knowing where to ask and not knowing what to ask.
For those who do not have access to the internet the problem is the same, but compounded by the lack of access to what is now the primary source of information. This is where the need to know the right question to ask becomes even more important.
There were numerous examples of only partial information being provided as the tendency of helplines and other information sources is to only answer the question asked, rather than develop a dialogue to explore what else might be needed.
Face to face access to information seems to be coming harder for the individual to find but is universally desired. Several of the meetings were used by some individuals as a source of face to face access with a departmental officer.
There is clear evidence that the further along an individual is in their personal journey through disability, the better informed they become. However there was also evidence that this can lead to both significant financial cost for the individual as well as discovering too late (given a terminal neurological condition and the length of time needed to work a path through the system) that particular support is available.
Although nearly all the responses provided were from people who are experienced in disability, when challenged to think back to when they started on their personal disability journey, people were able to describe how they struggled and did not know what they needed to know, who to ask or where to go to get information.
Customer Care – the second most common response relates to how individuals are related to. This includes issues of respect, empowerment, and choice and it would seem to apply equally across all statutory agencies.
The message in summary is “Keep doing what you are doing, but do it better”.
Although there were examples provided of where individuals felt they had not been assisted or respected, there were many examples of when individuals came across someone with whom they were able to relate and develop a dialogue, that their lives changed and they became better able to deal with the issues they were facing.
This supportive individual could be from a wide range of sources but the two key sources of this support mentioned most often are peer support – nearly always provided through the voluntary sector – and occupational therapists who were described as practical and down to earth problem solvers. However both of these sources are often discovered significantly in to the disability journey. It is also the case that the peer support provided in groups is not always suitable for everyone.
Several times suggestions were made that social media should be used as a method both of peer support but also information exchange.
A proposal was made that customer care training should be continually provided not only for provider staff in personal contact with service users but also for all other staff to enable a recognition of the impact of their work on the customer. The suggestion was made that this training should be mandatory.
Planning & Providing for Care & Support – Several comments were received from people who cared for a relative with a terminal condition over how long everything seems to take especially when time is fast running out.
It is noted that diagnosis of neurological conditions can take a long time and then this can be compounded by both the challenge of finding information and the length of time, for example to deliver adaptations to houses, which becomes an added frustration for the individual and the family.
Although it is recognised that staff cannot possibly know about all conditions, it is thought that it should be inherent on staff who are either assessing for or providing support and care to undertake individual research into the condition that they will come into contact with. Comments were made that this both demonstrates respect and value for the individual as well as helping to avoid unnecessary comments that can cause offence.
Support & Care – a common refrain was the expressed need for on-going physio and other therapies and their importance in particular for people with long term conditions that can deteriorate without on-going access to therapy. Many people seem to believe that this alone contributed to people having to go back into hospital.
If people are not eligible for social care, or it simply is not available, from whatever agency, then people with disabilities would welcome advice and guidance as to possible alternatives. Too often people believe they are met with a straight forward rejection, rather than recognition of continuing need and a dialogue to address it.
Employment – this is a significant issue for young people who are in the transition phase of their lives from school to the wider community, as it is also a need for many people with a disability, irrespective of age and was raised at several of the meetings that were attended.
In particular reference was made to Hampshire County Council’s internship programme and how this could be used as an exemplar to other employers in the employment of people with a disability.
The suggestion was also made that Hampshire County Council could take an active role with employers in promoting the employment needs of disabled people perhaps through hosting an employer forum on the issue.
Transport – Acknowledgement that the availability of accessible transport has improved over the years however comments have been made that indicate it is patchy across the county and often difficult to obtain outside Monday to Friday day time hours, other than expensive taxis. In order to achieve the vision in the strategy significant improvements are still required. The railways ramp provision service was given as an example of a simple, flexible and individualised service that works well. This service allows the potential user to manage their own travel plan and allows them to use a mainstream service.
Education – Several comments that people with a disability whether acquired at birth or later in life need support and training specific to taking on the challenges of living independently. Living independently and, for example, employing personal assistants was almost universally described as hard but also rewarding.
Criticism was made of specialist education that sought to provide a formal education but failed to equip people with a disability with the essential specialist life skills they would also need.
Environment and the local community – concern was expressed that simple measures such as the regular maintenance of the built environment, when it is neglected, can have a disproportionate impact on people with a disability and potentially increase their sense of social isolation.
The comment was made that when acquiring a disability “it is so easy to talk oneself into depression, that you no longer matter, but participating in activities with other folk, both impaired and able bodied can change all that”.
Several respondents who themselves take part in outside activities, highlighted the benefits they have achieved, through being able to access these activities. Social and physical activity either in the home or outside is seen as essential to the health and well being of people with a disability and key to achieving the statement on the front of the strategy document - ‘Its about having a life, not just being alive’.
The role of Hampshire Adult Services Department – Hampshire Adult Services is seen as an organisation with significant influence across the spectrum of agencies concerned with issues of living with a disability.
In response to the emphasis within the strategy document on partnership working, nearly all respondents, to a greater or lesser degree indicated a willingness to work alongside the department and its key partners either in developing local networks or engaging directly with service delivery and development.
4. Summary – the draft strategy has, and continues to be, well received. For many respondents the statement ‘Its about having a life not just being alive’ sums it up as a statement of intent and purpose both for the agencies involved and for people with a disability and their carers.
Nearly all respondents make the point that implementation is the key to the future and the strategy working group believes consideration needs to be given as to how this will be independently monitored in practice.
The working group that has drafted the strategy makes the point that to some extent the solution is ‘Keep doing what you’re doing, but do it better’, this is set alongside the discussion on the need to improve customer care, respecting the individual and personalising both responses and service.
Geoff Woollan. Commissioning Officer
On behalf of The Positive Partnerships co-production working group.
July 2014
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