Sharing information

Sharing information

The Bill gives Scottish Ministers powers to set up a statutory scheme to enable sharing of care records between the National Care Service and the NHS to support “the efficient and effective provision of services”. In setting up this scheme, the intention is “to ensure professionals get timely and accurate information to enable them to safeguard people at risk of harm and provide the highest levels of care” and to “empower people around their own care and data”, while also addressing concerns “around service users having to tell their story to multiple providers” which the Scottish Government argues “is not only frustrating, but can be traumatic”. The Bill also gives Scottish Ministers the power to set data and digital information standards which “will set out how certain information is to be processed and will be made publicly available”. The Scottish Government argues that setting out standards in this way “will allow technical detail to be included and to be updated more flexibly as required compared to setting the standards themselves in legislation”. The Scottish Government also argues that setting information standards “is important to improve equality for service users, and also to improve the quality of data used for secondary purposes such as national and regional oversight, planning, commissioning and procurement, regulation, research and national reporting”. If you agree with these proposals in the National Care Service Bill click the thumbs up button (👍) below. If you disagree with these proposals click the thumbs down button (👎) below. If you are unsure about the proposals and feel you need to know more about them click the question mark button (❓) below. If you have any additional comments about these proposals please provide them in the comment section below.


Entirely sensible.

Agree this is sensible as is absolutely shocking at the moment, with carers having to re-tell the same story multiple times, with massive inefficiencies. But it also requires significant upgrade in the security of systems that hold personal data.

From one unpaid carer to another, could not agree more. We were allocated short break fund for respite and cannot find any place in area to take my daughter. No medical care, no beds, no staff, is answer I get when I phone around and as our local authority is not a provider only a facilitator we are at an impasse.

Totally agree that as long as it can be made super secure, this is the sensible way to go since for many of us I imagine that Tesco may well have more data on our lives than the NHS does! As an unpaid Carer, I too am fed up have to tell and re-tell my story from one NHS facility to another.

Needs to be made clear to the individual about sharing their information. What if you move between care boards/services nationwide? Question of NHS anonymised information being sold to third parties, would this happen in the NCS too?

How shall this system be designed and how long shall it take to implement? These are the questions I would like to see answered as this shall be a very complex system to design and implement. There is also the question of what is going to be done to include people who will be digitally excluded either due to disabilities etc. or by choice.

The wording of Clause 36 is not inclusive, does not enable person centred services and as drafted, the NCS and NHS exclude citizens, carers and the Third Sector. It is organisation centred and denies human rights. It needs amending to include citizens, carers, families and the Third Sector. People need to have a personal data store to collect, store and share data. This is a human rights based approach, promotes equalities, inclusion, diversity and is a genuine person centred approach - DRAFT AMENDMENT - PART 2 HEALTH AND SOCIAL CARE INFORMATION 36 Health and Social Care records The Scottish Ministers may by regulations provide for a scheme that allows information and data to be shared, including the use of personal data stores with citizens, families and carers in order that services can be provided efficiently and effectively by and on behalf of— (a) the National Care Service, (b) the National Health Service and (c) the Third Sector.

This is sensible and agree it needs to be done, but there is a lot of conflicting information online about what can and cannot be shared and with whom. I feel there needs to be a lot more education for the public on the rights of people with disabilities (any kind) or mental health issues and much less time spent on giving out guardianships that are not needed. There are so many do's and don't around information sharing, it is a mine field but if someone has figured out how to make it easier for us all to do this then I would be all for it.

For me personally it makes sense to set up a statutory scheme to enable the sharing of case records so the professionals get the information that helps to safeguard people at risk.

This would be incredible if it works and can happen and would prevent people having to tell their story again and again. Although there is always a degree of interpretation when capturing info.

More joined up working is essential to have an holistic approach to the health wellbeing of an individual. Experience of some members of our board with social work back grounds have witnessed poor service delivery when sharing of information is absent. A good IT system that both services can access to either input or gain information e.g.‘Carefirst’ was a perfect tool that social work in the Highlands used, however during integration of Health and social care it was not easily accessed by all NHS professionals and that’s where integration broke down. Things may have changed since?

Kinship Carers repeatedly speak of difficulties in being allowed to give consent for medical and dental treatment. This causes delays in children’s care from GP and also hospital care causing anxiety and distress to the whole family. Often Kinship Carers do not have a legal order in place to show they are the main carers of the child this can cause delays and anxiety for the whole family; a simple process needs to be devised to ensure children in Kinship Care receive the same level of care as other children living in non-care arrangements. Incidents are described where biological parents, who do not care for the children, are included in mailing concerning the child where the Kinship Carers are the main carers who are excluded from the mailing. Will there be clear processes in place for consent where children are living with Kinship Carers? And sharing of information is only with the Kinship Carers when appropriate?

The Scottish Government must ensure a NCS ends ‘postcode lotteries’ and enables children and young people to receive the same level of support when moving between Local Authorities. The Scottish Government must Improve communication and information-sharing between services. In order to embed equality and human rights for Care Experienced people, the Scottish Government should require better data collection about health, social care and wellbeing outcomes to identify and tackle inequalities. Evidence from Who Care's Scotland Bairns Supper report

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