Attended by 40 Carers: 

Also attended by:

BH gave apologies for Rachel Smith’s absence as she was currently facilitating  Caring with Confidence Training for Carers.  Rachel had recently run marathon’s in Arizona and Barcelona in the MCP Logo T Shirt and any sponsorship money was to go towards carers activities.

Carers from the 3 Learning Disability Carer Groups would be coming together on 31 March for a special event attended by representatives of the Learning Disability Team from Social Services and Health. They will be providing information about the team, Carers Assessments and how they are working practically when the person you are caring for is moving on to supported living, what you can expect and guidance. All learning disability carers welcome to attend.

The Older Persons Forum on 26 March was for anyone over the age of 55!  The topic would be financial issues, loan sharks & Kent Savers (loans at reasonable rates).

Leaflets were circulated from Kent Search & Rescue.  They suggest that when the clocks are changed twice a year, in addition to a reminder to check  the smoke alarm, you take a photo of the person you care for to help them find someone with dementia, learning disability or mental health problem who may wander off.  They also provide a useful form to complete about where they are likely to go, where they used to live or their old workplace,  which would assist them in searches.

Aiming High – information about short breaks and activities for children with disabilities under 18 contact Natalie Smith at Voluntary Action Maidstone.

Forum Topic

BH  explained the NHS Pilot was aimed to improve support for carers within the NHS, from the GP practice, when the person you care for is in hospital, or when you are, or when you or the cared for person are attending hospital based services.  She explained that Jane Pantony was working with MCP as part of the pilot project .

Jane Pantony – NHS Pilot Carer Support Worker explained that the pilot would run for a year, based at the College Practice. If successful it was hoped a model could be rolled out to other GP practices to operate a carers register, provide carers with health checks, prioritise for flu jabs etc.

Before the Panel arrived carers worked in small groups to identify their own positive experiences of being well supported as a carer by the NHS, where things had not worked well and to suggest ideas for improvement. Carers put these on post it notes which were collated and would form the basis of a report.

Des Long – Team Leader for Hospital Care Management Services worked with hospital based care managers to ensure that, where necessary, discharge plans were activated smoothly. He was also liaising with the Alzheimers Society to work together to establish a singing group in Maidstone.

Caroline Burrington  - Project Manager for the West Kent PCT  Pilot  

Dr Helen Terrell – a member of a Coxheath Practice and a facilitator for Cancer Care Services emphasised the importance of advanced planning for end of life care.  Research showed that most people would prefer to die at home.  She handed out two booklets and hoped to get feedback from carers about which one of two documents they thought would be most useful to them. Death could be easier with better planning. She said GP’s needed the right information to share with patients to signpost them to services – it was difficult for them to keep up to date with local charities and services in the community.

Carer comment:  even if we do go for a hospital appointment very often follow ups get missed as we forget about our own health so a phone call reminder would be helpful.

A:  I think people have to take responsibility for themselves, you can’t expect GPs and nurses to run around after you. Once you are recognised as a carer this should be flagged up.

Q:  How can I get hold of a care manager at the hospital when I’m told the person I care for is going home?

A:  There are 12 wards and each ward has a dedicated Care Manger so if I knew which ward then I could tell you who the Care Manager would be.  We also have a Care Manager attached to the Pre-Assessment Unit.  (DL would send a copy of the list to MCP). Out of about 40,000 patients a year, we have 3,000 referred to us by the nurse on the ward.

Comment:  There are carers activities but I can’t leave my husband to go on them.  I only have 3 hours Crossroads a week.

A:  Every time I come to the forum it is always Crossroads that is the most valued service.

BH:  You could ask for a Direct Payment to pay for Crossroads cover to enable you to come to the activities.

Comment:   Carers need just a small amount of money to provide support on a regular basis.

Q:  Why is the discharge plan not set in place on admission?

Q:  I know of a case where the wife had dementia and the husband collapsed and went to hospital. Their son had to stay as there was no support from Social Services.  He was told to go to the GP and ask for fast track.  He is back home still trying to access care.  When there is a crisis and the carer is a patient in hospital who is responsible?

A:  If they are not known to Social Services then the Care Manager would step in if there was no family support.  An emergency placement would need to be made.

BH:  You need to have a Carers Emergency Card then you just hand it over and the emergency care plan will be actioned.  The carer registers for a card by filling in the form with contact details of someone to call in an emergency. The card has a unique reference number which brings up the carers details and those of the person they care for.

A:  In each surgery there may be someone who could be a carers advocate. Often there is a receptionist who has worked there for a long time and knows the community and local people.  There’s a ton of mail coming to the surgery each day so someone needs to sort out the important and useful information from the junk mail.

A:  This is one of the things the pilot will be doing. Most practices will aspire to have a carers register but the computer system does not allow for a useful way to identify that someone is a carer so a simple flagging up that you are a carer does not work at present.  GPs have different systems so we are discussing carers having hand held records which would include permission for the carer to be allowed in consultations with patients. 

Q:  If you ring for call out from a GP you don’t get it.  My husband has MS and I dealt with a relapse alone and rang for GP home visit to check him over.  I was told if I thought it was that bad I should go to the hospital.  I explained the practical difficulties of getting him to the hospital when all it needed was him to be checked over but was just told they could only give me a prescription.

Q:  I had the same experience with my husband in October last year.  I rang the ambulance but they didn’t find anything wrong. It is also a waste of resources when the GP could have checked him out.

A:  My own experience was good, my GP came out when my father had a stroke and even rang up later to see if mum needed anything.

A: GPs are completely overwhelmed with their work load so the surgery does ring everyone who has requested a home visit for more information as some patients do request it for minor things.  We have to prioritize so if we think it is an emergency we encourage patients to ring for an ambulance. Part of the Advanced Care Plan I want to introduce could include a statement that you want to remain at home and take your chances.

Q:  Practices are getting so big that we are often not getting the same response with the same Doctor.

A:  Most GPs value continuity of care

Q:  Does your role just cover Maidstone or cover patients seen in a London hospital? My daughter has an ongoing chronic condition, Crohn’s Disease, and we need a place for her for respite but she doesn’t tick the right boxes so was referred to the hospice.  She has palliative care pain relief but no palliative care and is on ‘off the scale’ opiates. Do I home in on Continuing Care?

A:  When a patient is deemed to be Continuing Care and their medical needs are so high we tend to say that it is over to the NHS.  I will meet you after the forum to make sure you have the correct information and contacts.

Q;  What happens if the carers has a different Dr and practice to the cared for person.

A:  Drs are medically trained to treat the patient but when carers have hand-held records it will identify carers.

Q: it a good move to have the same GP?

A:  I think it is definitely a good move.

Q:  There are a lot of people out there that don’t know they are carers and have no help at all.

A:  We are doing a big marketing campaign for people to start to realise they are carers.  You should soon see posters in surgeries, libraries and Gateways.

BH Thanked everyone for attending – the next forum to be the 50th Maidstone Carers Forum to be held on Tuesday 15 June 2010 during Carers Week.