Attended by 28 Carers: 

Also attended by:

Superdrug 10% off vouchers were distributed to carers.  Some branches were also offering free health checks such as mole checks and blood pressure checks

The previous day carers had enjoyed a river trip basking in summer sunshine.  The next trip was booked for 30 June and another trip planned later in the summer.  There was still time to book a place on the Back Care Course to be held at the European School of Osteopathy. There would be a talk on basic anatomy and advice on how to protect the back when lifting as well as discount vouchers for treatment. On Thursday 17 June the Kent & Medway District Involvement Forum would be holding an event in Ashford. 

Consultation

Alzheimers Society

The Adlzheimers Society had organised a petition around ‘Charging for Care’ which was circulated to carers

Information booklets for carers

carers were asked their views on the cover design for the updated booklets and a new design was selected.

Invitation to a Cream Tea Party

BH explained that the Maidstone Carers Project was managed by a charity called Maidstone Volunteer Bureau which would soon be changing its name to Voluntary Action Maidstone and in order to mark the event they would be holding a cream tea to which carers were invited.  The change was necessary in order to reflect the community service work the organisation was now engaged.

Maidstone Borough Council were moving offices to the Chequer’s Centre that week and in September the new Gateway Centre would be open. The Gateway would bring together all the various functions of Maidstone Borough Council under one roof as well as representatives from Kent Adult Social Services, Occupational Therapy and representatives from the voluntary sector as a ‘one-stop shop’ so that people could go into one place for all the information they need.

Sue ran a pilot course in Maidstone in February 2006 called the ‘Looking After Me’ course and was delighted to hear that carers from that course were still meeting as a group.  There were now more opportunities to run courses as Government funding was available.  She explained the Expert Patient Programme began 6 years ago and runs for 6 sessions of 2 ½ hours each for people with long term health problems to encourage them to look at things positively and look at ways of resolving problems.  Janet Cox, a carer, had recently been on EPP course and had decided to become a trainer herself. Janet thought there should be some sort of follow up after the course as some people were quite seriously depressed with their conditions.The course empowers the patient to take control of their condition. There was a good section on communication as some people could not communicate with their doctors and half the class admitted they were reluctant to go to the doctor. A group of 16 people get together and work through a list of topics which enables them to pick up on things to help individuals. There is an action plan each week which focuses on positive things people can do rather than what they can’t do. They look at how restrictive their expectations were and encouraged to choose small achievable goals which would be shared with the group the following week. Exercise is a good way of dealing with problems and sharing experiences with other people on the course who understand and empathise. The course leaders and facilitators are people who have been in the same position with their own health problems and /or are carers.  The first phase of a new pilot is due to roll out in August. MCP have registered an interest in the course.

BH found that what came out of the course was that for the first time carers were thinking about themselves instead of putting the cared for person first.

Comment:  It is harder for a man to care than it is for a woman.  Without my daughter I would not be able to cope – I get angry.

BH:  I think it is not necessarily more difficult but there are differences.

Comment:  We all feel anger and it was valuable to know other people were in the same boat.

CS:  It was interesting to find that absolutely everyone on the course thought there was someone else worse off than them!

BH:  We will let carers know when there is information about courses available.

Refreshment Break 11am

Topic:  Carers Health

BH invited the Panel to introduce themselves:

Marcella Bennett works for the Primary Care Trust based at Coxheath Centre advising people in their own homes on moving and handling in order to reduce the instances of injuries caused by lifting incorrectly. 

Emma Cain is the Public Liaison Officer for West Kent Primary Care Trust and was standing in for carer lead, Julie Ross.

Chris Cogdell had been working at District Manager for Adult Services in Tunbridge Wells for 11 years, covering people with disabilities from 18 years upwards, older people and older people with mental health needs.  She was just 5 weeks into the job and was pleased to talk to carers to learn from them what she should know.

Comment:  My son aged 17 needs an infusion every week of replacement antibodies.  I am trying to get someone else involved with giving him this medication but no one else seems to be able to do this so I am unable to take a break.

MB:  There is a Community Nurse Team in my building.  If you let me have your name and number I will speak to them about it. This service runs from 6.30 – 11pm.

BH:  As a carer you need to know the back up is there for reassurance.  You have a right as a carer to have your needs assessed and that should be one of them.

Comment:  Whose Doctor should look after the carer?

BH:  If you are with the same Doctor then the needs of the carer should be recognised.

EC:  One of the things to check up on was how many surgeries have carers registers.

Comments:  Some surgeries have a system where people just sit and wait their turn but if you can’t leave the person you care for you should go to the top of the queue.  I am on the carers register at Coxheath and I am recognised as a carer and none of this happens. I have been registered for 10 years and I got no consideration and still had to sit and wait for 2 hours.

BH:  That is an issue for EC to take back to the Trust.  What assistance can carers expect? 

MB:  Some carers have difficulty getting to the surgery but are not offered home visits.

Question:  When I visit the Doctor with my husband who has MS and short term memory loss I am asked why I am speaking for him. He is then given instructions for medication which he can’t possibly remember.

BH:  MCP have produced a standard form of letter which you can get your husband to sign to allow you to deal with these matters for him.  A carer also mentioned that you can also make similar arrangements with the utility companies.

Question:  Once a diagnosis is made by the consultant psychiatrist do they just pass things over to the GP? It seemed that the diagnosis was made and that was it.

BH:  If your wife requires support from the Mental Health Team then her GP should get in touch with the Mental Health Services.

VC (Alzheimer’s Society):  GPs must have a rule about confidentiality which is inhibiting them from doing this.

MB:  There is a Professional Code of Conduct and GPs are getting a lot of training about Mental Capacity.  This should be offered by the GP.

Comment:  We now have a new GP who considers two people including the carer.

VC:  Not everything fits every situation.  There are different ways of dealing with someone with a mental health condition. An  individual patient has capacity and able to make their own decisions but sometimes people are unable to do that so someone has to decide in the patient’s best interest.

JM (Maidstone District Partnership Group):  A lot of things have changed since the Mental Capacity Act came in but we need a simple version that refers to us.

BH:  We have some good booklets in the office.

Question: Can you tell me, you read about rights of disabled people and carers etc., continence - why they are asking you to measure? 

MB:  Noting the frequency and the amount helps you to provide the right pad so helps to diagnose what the problem is.

Comment:  People are waiting months and months for pads.

MB: I will follow this up.

Question: It is 3 ½ years since the continence adviser visited my father.  The pads are not right.  Dad won’t go out now.  We have stacks of pads which are not suitable.

MB: The District Nurse should be re-assessing. Contact her through the GP. There is a notebook in the Surgery, so ask to see your request written down.

Comment:  The OT booked an appointment for an assessment of what aids and adaptations were needed.  It was cancelled and they have not arranged another date..

Comment::  The care workers sometimes come hours late so my husband is in bed too long. Some care workers are not trained properly and could have been working in a shop the week before.  They should have a minimum training programme in place before they start work.  We complained and now the agency wants to terminate the contact.  Why isn’t there someone overseeing what is going on?

CC:  Care provider agencies are monitored by CSCI and I agree that may not be sufficient but there are not that many people that want to do the job because of unsociable hours etc. I think you do have to maintain a good communication with your Care Manager.

Hysterical laughter followed!

CC:  They are there, they do answer messages but there is only a team of 10 for the whole of Maidstone.

Comment:  I used to live outside Maidstone and the Care Manager came to see us and gave us a number to ring but although I’ve tried, I’ve not been successful. It was only when we got in touch with the Dr that we managed to get in touch.

Comment:  I waited in all day for my husband’s Care Manager to ring back but no-one did.

CC:  I hear what you are saying but the team is not very large.  If you don’t get a call back then get in touch with the team leader and if you still don’t hear then get in touch with me.

Question: Why don’t they call back?  MCP have just a small team covering a large area but they always call back.

Comment:  Agencies not providing a good service should be struck off.

CC:  You may be getting a bad service but others may have a good service from that agency.  There is CSCI registration and it is up to CSCI to strike them off. If we stopped our contract, people receiving a good service would lose out.

CJ: (Contracts Officer based at Kings Hill) We need to know about the complaints you have about these agencies.  Checks are not made as regularly as we would like but if problems come up we will step up the visits.  We have our own contract which providers have to adhere to.  If they aren’t working then we work with them to put it right.

Question:  Do you state acceptable times for getting people up and putting them to bed?

Comment: We used to have an action group for domiciliary care and held quarterly meetings with providers so we could go along and face them with problems.

CC:  I’ll talk to Ann Taylor who is the Chair of Domiciliary Providers. You may want a representative at a future Forum.  It is completely unacceptable for these things to go on. Write to me and let me know which agencies you are dealing with.

BH Summarised that MB would be taking back queries around continence.  Emma would be taking back GP Carers Register issues and CC would be taking back all other queries. CJ would be sending a monitoring form to MCP to collate issues which carers raise about care agencies.

 The next Carers Forum will be on Wednesday 22 October 2008