Genetic Alliance UK in Scotland:

Patient Rights in Scotland

In September 2008 the Scottish Government announced that they would be consulting on a "Patients' Rights Bill" for users of NHS Scotland.  The aim of the bill is to set out a clear legal framework of rights for patients and to clarify the standards expected of the NHS in Scotland. In the draft bill each right was balanced with responsibilities for the patient. For example, the right to health services provided with care, skill and competence was also based on patients complying with advice on their medication and treatment.  The rights the Scottish Government were proposing were outlined as below:

• Access - equity of access to NHS treatment and services
• Dignity and Respect - dignity, respect and consideration for the individual
• Safety - safe and effective care and treatment
• Communication - that is clear and appropriate
• Information - about services and care and treatment options
• Participation - in decisions about your healthcare
• Privacy - privacy and confidentiality of your personal information
• Independent support and redress - a new process that enables you to comment on care and raise concerns

The draft bill serves as a vehicle to strengthen the Government's commitment to patient participation and involvement in their healthcare; key themes identified in Better Health, Better Care, 2007.  It is also hoped that the bill will strengthen patients' rights to receive good quality, safe and effective care, and simplify and make accessible a fair complaints process.

We were interested to find out what people living in Scotland valued most in terms of their rights, and whether the bill was a useful template on which to base a "contract" for how NHS Scotland will work with its users.

So, on the 9th December 2008, we held a day-long consultation event at the City Chambers in Edinburgh and asked for your views and experiences.  We also used the event to launch the Patient Engagement network we have been building in Scotland.  The event was jointly organised by ourselves and our colleague Hilary Osborne, who runs Gengage, the Scottish Healthcare Genetics Public Engagement Network.

Attending on the day were patients affected by genetic conditions, their carers and relatives, representatives from patient charities and healthcare professionals (employed by both voluntary organisations and NHS Scotland).

After a series of presentations, the discussion sessions were facilitated by Dr Douglas Wilcox, a Consultant Clinical Geneticist from Glasgow Regional Genetics Centre.  We began by reviewing our general impressions of the bill as it stood and determining whether it covered all of the key issues.  In the afternoon we worked in small groups to discuss the two most relevant rights (to each delegate) in detail.

The information gathered at the Patients' Rights bill event has been compiled into a comprehensive report, Genetic Healthcare Patient's Rights, which you can read here. This gave a wide overview of what people expected and what they actually recieved in term of the wide range of health and social care provision that those with genetic conditions draw upon, from community and health specialities, much of whom are non-genetic specialists.  We also submitted a version of the consensus opinion to the Scottish Government Health Department, which you can read here. 

The Scottish Government were influenced by our contribution to the Scotland-wide consultation.  A detailed analysis of all the consultation responses has been published, as has a briefer Scottish Government brief response.