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Hi Jackie,

The problem with this is small numbers. I have calculated median ages at death of people with learning disabilities for local areas, but in some places these make no sense - areas with apparent median age under 5 set out below). For example in one London borough, the figure is under 1 year. This is partly because of small number problemss, partly from incomplete reporting of LD on death certificates and partly because of resettlement of adults with LD from London outside the capital - so they live in London and then move to and die in Kent or Essex etc. (BLACKBURN WITH DARWEN UA - median age 3.5 (10 deaths), CITY OF LONDON - median age 0 (0 deaths), EALING - median age 3 (19 deaths), HACKNEY - median age 1 (10 deaths), ISLES OF SCILLY UA - median age 0 (0 deaths), KENSINGTON & CHELSEA - median age 1 (8 deaths),

Hi sally You can gather evidence on this via the UK health and Learning Disability Network at http://www.ldhealthnetwork.org.uk/forms/healthjoin Janet

is anyone willing to share how they have evidenced any health gains for people using health action plans and annual health checks

Following our discussion at the meeting on the 6th it would be really helpful to know the following: Are the supported living services which are not supporting people to go to health appointments etc. providing services 24/7 or just a few hours of support? Have there been attempts to resolve issues locally, and if so, what was the result? Are you able to give details of specific areas where this is an issue, and if possible contact details of the relevant service manager?

Hi Gyles I know that you have already done so work on this. As mortality is probably the biggest indicator of health inequalities, I would suggest the JSNA should include identification of the mortality figures for people with LD in comparison to the general population. Ideally thiis should also include figures for those 'at risk'(people with PMLD), though I recognise this is difficult to obtain. Jackie F

South Central have done a peer review of their acute hospitals. The easy read version of the report is avaliable in the resources section.

Can people suggest what indicators they would like to see the LDPHO providing here. I have attached (in respources - a file called JSNA notes 110914) some notes on this as a starting point for discussion.

Hi thank you very much for your responses to my question. this is really helpful, and it is great to get the views of a carer as well

Many thanks Fiona

Hi Thank you for keeping me notified it is very much appreciated Regards Andrew

Hi Andrew. As you can see the report is now published, Gyles

This sounds like a very good idea and will help to identify common themes / issues. Regards, Katy

Yes a good idea to share results. Janet

We are hoping to publish the final version of the audit tool along with an easy read version by the end of July. When we have talked about it at events, a number of participants said it would be good to share the results of their local audits with others. We could use this discussion group to do that as there is a facility to upload resources. What do people think?

Good idea re Michail. Will put him on for 1.30

I will need to confirm a time with Michail. He suggests an hour is fine and would prefer the afternoon. Shall we invite him for lunch and put him on at 1.30? Yes I can do a CI update. 15 mins would probably be enough for that, unless anyone has any specific aspects of the CI they would like me to talk about. Could members let me know if there is please? Thanks

The Canalside Bridgwater is booked for our next meeting on the 20th Sept. Re the agenda, Lesley has contacted Michael Sanidas from the SHA, who is going to talk to us about the Equality Delivery System. We wanted to talk about working with GP commissioners and Helen Toker-Lester is going to share learning from Torbay. We wanted an update about the Confidential Inquiry. I think Lesley is going to do that, and we also wanted to talk about sharing information (Caldicott). Please use this space to comment on the agenda and talk to each other between meetings.

May I add to this: as a carer of a young man with a learning disability and long term medical conditions, I am particularly interested in ensuring that ALL hospital staff treat people with a learning disability with dignity and respect and ensure that they treat the medical condition and not the learning disability! It is also important that all vulnerable people, including those with a learning disability should have a health care plan which should be portable. Here in Hertfordshire, there is currently a "road show" going around the County introducing the "Purple Book" being launched by the Health Facilitation Nurse team, which ought to record everything that a health professional should know about a patient with a learning disability and that ought to go with the patient in any emergency or for any procedure. It ought to include what to do/who to contact in an emergency; medication etc... I fully endorse the advice to ensure that information is communicated at a level that the patient (and carer) can understand (? easy read information about angioplasty) and allowing the carer to stay and support the person (and staff) through the procedure. Does your hospital have a Carers' Policy? My understanding about the Mental Capacity Act is that people are deemed to have capacity unless it has been proven otherwise but of course I am no expert on this very complicated legislation! One thing is to identify patients who may have a learning disability, another thing is actually raising awareness among ALL staff as to how to communicate and care for someone with a learning disability, having a specific team who can help staff and making sure that staff use the carer's expertise when appropriate. More and more people with a learning disability are being encouraged to live on their own with contracted support and there are issues around identifying who the carer is when there is no family member, and who has the duty of care for that individual especially in a crisis! Many contracted support workers will shy away from responsibility citing Health & Safety and generally saying "not my job guv!" which does not help paramedics or hospital staff in a crisis. At the end of the day, if my son were to be admitted in an emergency and his parents were not around I would want doctors and nurses to make their best clinical judgement about the condition he presents with, but of course that sounds like common sense and the litigous tendencies these days means that you have to ensure that the treatment you give, is the treament that the patient accepts. Person centred planning means that health and social care should join up and work cohesively in the interests of someone with a learning disability. I don't know if this helps, but glad to contribute. Susan

Hi Fiona I have talked to Zoe Mclean, the acute liaison nurse in Cornwall about this. We suggest checking your Trust's mental capacity act and consent policies. You say "Consent is usually taken verbally via a very quick discussion between patient and cardiologist".

At this point the cardiologist assesses capacity;

If the capacity assessor has judged that the person lacks capacity in a specific area then a decision can be made on the person’s behalf but it must be clearly shown that it is in the person’s best interests. (If the cardiologist assesses the person lacks capacity then he/she become the 'decision maker')'.

The 'decision maker' then either believes this treatment is an emergency treatment and the treatment is carried out immediately in the patient's 'best interest'. Or they decide it can wait until a 'best interest' decision has been made with 'significant others' involved in the persons care. (Under the Mental capacity Act, many different people may be required to make decisions or act on behalf of someone who lacks capacity to make their own decisions).

With regard to reasonable adjustments, yes you should be making 'reasonable adjustments' to comply with the disability discrimination act 1995.

Examples of adjustments could be * ensuring the information is communicated at a level of that the patient can understand (? easy read information about angioplasty). * letting the carer stay and support the person through the procedure. * involving the acute liaison nurse for learning disabilities (if you have one).

With regard to identifying people with learning disabilities, do you have a flagging system or is the Trust considering electronic flagging? Hope this helps. Sue

Hi I am keen to know whether anyone has looked specifically at services for people with Learning Disabilities accessing acute cardiolgy services when they are suffering from a heart attack. We provide a PPCI service at Freeman Hospital in Newcastle upon Tyne which means that patients are now brought to us very quickly by the paramedic service. Once in the CCU patients are transferred immediately to the Cardiac Catheter Lab to have an angioplasty. Consent is usually taken verbally via a very quick discussion between patient and cardiologist. I am concerned about how my staff identify patients with LD's, assess capacity to make decisions about treatment and whether reasonable adjustments are or can be made in an emergency situation. I can find very little evidence in the medical/nursing literature that this service has been looked at from a Learning Disabilities perspective as it is such a new treatment option in the care of acute myocardial infarction. I would therefore be very grateful for any assistance that you can give me or if you can recommend someone I can contact about this Best wishes Fiona Thompson

Hi Eric Thank you for the reply the information provided will prove useful when we deliver the next education sessions around the health checks I look forward to the forth coming report Regards Andrew