SUPPORTING CARERS AND FAMILIES - LIG WORKSHOP

FOR HAMPSHIRE LD PARTNERSHIP BOARD 6.7.2016

You will find here:

notes from the LIG workshops (colour coded) the report from Judith Lesley-Smith - green LIG the report from Carers Together and responses to promises made by the Police, Passenger

Transport and Advocacy

Main issues are (raised at the Partnership Board on the 6th July 2016)

Carers are still not valued Heath checks for parents/carers are not happening Carers assessment: no service after the assessment Older carers are warn out. Crisis Respite will be coming at last via Shared Lives. There is currently

no choice and no flexibility Isolation (no named person social worker) Communication is bad. No database, no mailing to carers who

want to be involved in their children’s lives. General concern about carers looking after the young ones at one Worried about the concept of doing more for yourself. Inaccuracies in assessment – repeat process Out of service dentistry issues

Purple LIG

Group 1:

Clear communication to parents/carers

Family and carers are key

Group 2:

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More work needs to be done on annual health checks. Reminders to GPs via the CCG health bulletin.

Carers strategy and carers Partnership Board – Flo/Andrea to feed back to group

Group 3:

Our promises - Adult services and health will make sure (page 5/6)

We think this is happening. There is an agreement about times for parents with children at school. Some staff can be flexible with their hours.

Staff share information when it is OK to share. Connect2Support will help with this. Making sure the information is accessible could be better – there is not funding often to do this.We don’t think teams are always as good at this as they could be. My Life My way gives everyone the chance to be involved in support planning so this will help.

Teams share information about what is available but some things aren’t available in some areas and this is getting better when teams tell commissioning about the gaps. It can be difficult finding information Sometimes groups have loads of information but we have not found the best way to share it. Connect2Support might help with this. GP’s don’t always know what is available.

Yes and No. sometimes they are. Teams have to work with carers. Teams get more compliments about good work than complaints. My Life My way will make this happen more.

We think we might miss out finding out what young carers think sometimes but we are getting better at checking if they are young carers supporting people.

We have got a LIG/Hants LD PB und the LD plan. People have visited Parliament, they have “meet the team” days and there are events for people to find out more and have a say. Cllr Fairhurst is our LDPB chair and can listen to carers and make things change.

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Some people with LD are now looking after parents. They are not known to Adult services. It needs to be flagged up with surgeries too. there is more pressure now than ever before.

LD framework did not reflect personalisation (from 200 providers to 40). People have been offered direct payment instead. Family members are spending time to support people with learning disabilities.

We need clear information in particular assessment support, how to appeal and complain (flowchart of some sort please)

Carers and families should be put on a mailing list so that they know what is going on in their locality. Note: AIS does not allow to send emails out to everyone. Libraries and group can pass on information. Each LIG could set up their own email account and get feedback this way.

Carers need meaningful information Charging policies and paying for care consultation: has everyone

had a letter yet? consultations should be in easy read. Equal ops. Lobby Supportive communities: come to the LIG?

Orange LIG

The word respite does not appear anywhere The assessment report going to panel does not get given to the parents

beforehand. It can lead to a lot of errors and concerns. Parents generally should be kept informed. Most parents will have an

interest in their child whatever how old they are. Launchpad, please keep the parents informed even if there is not much news

Not sure if equal partners People should use complaint procedure if not happy Families need to be included if they wise Page 6: community learning does not always know Young carers: what is happening? Page 7: health, magic number is 40!

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Green LIG

service users: please speak to me if I live at home… then check with mum about

meeting police still help us with Hate crime. Victim to understand process LD team have a pack of information available in areas. Some

people cannot look on the internet. Help transition between child and adults.

Parents/carers and professionals: Government survey sent to groups (thanks Judith) Supporting carers and families is a national issue. Not just

Hampshire Some parents are worn out Respite is needed Carers assessment is not affective. Everyone should get one but

not everyone knows about it. Carers strategy: see Emma Dyer at HCC Is there advocacy for parents/carers? Community teams: some people are better at giving information

and local services. The Havant team is good. Connect-to-support website coming up in Hampshire

Notes from Judith Leslie-Smith (parent/carer rep for Green LIG)Hi, I am the carer for the green LIG and in our discussion on the chapter 8 we were of the general opinion that points raised in the chapter while appreciated they were only minor tweaks to existing arrangements and that the lack of support for long term unpaid carers was totally inadequate and did not respond to their needs.

Examples given for ‘Support” were a regular one day off respite together with a two weeks break to allow carers and the rest of the family to have a holiday break together. No recognition was ever given that a carer might wish to pursue a career or even hold down a part time job. Caring was a full time commitment for life. We recognised that changes in attitude towards the 6 million carers, requires government acceptance and funding but that without strong local governmental support this would never become recognised as an ‘acceptable’ 'policy.,

In addition to this one carer suggested that an ANNUAL carer’s review should become policy so that the on-going caring responsibilities could

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be monitored in case of changes and increased support needs. It was observed that from personal experience no practical support was offered until the situation became critical. Several carers wondered if this was a gender issue as when there was a male surviving carer more seemed to be put in place than if the remaining carer was female.

On a more general note and as result of further conversations with parents of our Kingsley Carers Group in addition to the recent Green LIG group, I would like to add that with the emphasis of the Transformation 2017 of “Enablement” and an “asset based” assessment process which relies on:

What an individual can do for themselves What the family can do for them What the community can provide With a paid for service being a “last resort”

It does little to give value to, or acknowledgement of, what families are already providing. Many worry that their already pressurised life will be put under greater pressure because they will be expected to input more when there is no more to give!!.

Blue LIG

Assessment being made without the help of advocacy for people with complex needs. Potentially unlawful so being reviewed.

What is happening to safer place scheme?

Figures on Mate crime? More visibility of the police in the community

Poor communication and lack of communication to parents/carers. Most parents want to be involved. It is a small minority of case that do not wish parents to be involved.

Inform carers of events. Some carers do not have computers so paper form/letters are best.

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AIS: adult service system – clients are filed on line. There is a lot of information but Adult services rely on people to give the correct information (address, mobile phones)

A pack for carers would be good.

More information sent to carers about carers assessment.

Timings are important. Let the carer know and make sure the appointments are suitable to everyone.

Young carers can have advocacy for an assessment but Amanda said that so far, there has not been a single referral.

Role of staff to work on Saturdays for assessment. Marcia was involved in the interview of the new director for adult services. Things are changing but it takes time.

Role of health to provide some flexibility. How do we get the GP register to get information on everyone? Some GPs do not have the same system as everyone else.

Adult services/health and children services: loads of the way. My Life My Way. Transition to be robust

Advocacy:Parents at the LIGs did not have involvement with advocacy as they advocate for their own children. They could not comment.Newsletter would be good.

Yellow LIG

Carers time is precious. My spare time is taken dealing with problems. Parents have other

things to do too. Assessments should be right. There are always inaccuracies in

assessments, and sometimes, big mistakes are made. Accurate history of the child on file. If the background information

is right, why rewrite everything? Meetings (reviews) please give more notice.

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Parents want to be involved in the reviews. Please send information to the parents too. they act as advocates.

The contact centre is so impersonal. Health (dentistry) is a battle.

Hampshire Learning Disabilities Plan- Carer consultation

The Group looked at the following issues.

1) Is the plan working for you? 2) Is the plan working for people with Learning Disabilities?

The LD plan has been in place over two years now and quite a few issues have arisen from it. The plan doesn’t always focus on the smaller changes to a

person’s life that the plan and the new framework have created such as the wish to keep the same support worker and provider.

It would appear that HCC may not have created the LD framework to support people with LD as it is shown that it is easier (and more cost effective) to have 40 providers than 200+ and this does not seem to be in line with the Plan or personalisation.

If people do not want to use the new providers their only option is to use Direct Payments which involves managing the money and support themselves which is a lot of extra work and pressure on the shoulders of family carers, the majority of whom already support their family member several hours per week at no cost to HCC.

There are big inconsistences in amount of support/respite/rights and information about services given to family carers – seems to be “he/she who shouts loudest gets the most”

Many family carers provide support for more than “normal working hours” per week, a few can get carers allowance for an adult that works out at £2.66 per hour, but does not include holiday pay, and they can only earn an additional £110 per week before the allowance is reduced.

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There needs to be transparency and there needs to be the same rates/ support/information for all carers.

Case Study 1 o I received no information or support from HCC and have

only managed to get a diagnosis for my daughter (age 20) a year ago. There is also no appeal process for refusal of support.

o When an assessment goes to panel and is refused there is no information to tell you what you can do next to appeal this decision.

o When people are offered respite support they are often told that the person they care for has to go away from home for up to three weeks instead of having the option of support within the home.

o I have also never seen or been told about the Learning Disability Plan until now/workshops or how I could be involved.

This Case study was not an isolated case, so suggestions for things to improve the situation

1. Clear information about, who to contact for assessments/support.(The Contact Centre is long winded, will not always transfer you to Social worker unless you are current case and have a direct line number). We know Social workers cannot keep “cases open” but every service users name must be on the system, so Contact Centre staff could transfer the family carer to the Duty Social worker at the team their son or daughter last had contact with. Family carers need support to continue to care and to save the Department money, they will only contact the Social Worker if there is an issue.

2. Clear guidelines on the process and now to appeal/complain are needed, this could be in easy read, so everyone who accesses the Department could use the same Guidelines/Flow chart.

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3. Every family carer needs to know about the Learning Disability Plan, their Local Implementation group, workshops, The Carers Strategy Group, new initiatives e.g. (My Life My Way), information days, like 16 November and 28 November. – 12 Family Carers present only 3 knew about these events prior to day.Community LD teams must have a current and passed records of people they have supported. Most families would welcome a “information to share” form so that they could be advised of what is going on, via email, so they can be involved.

4.How is information distributed to hard to reach groups such as the Gypsy community?

5.Need information and support for older parent carers who have been caring for all their lives and will have to hand on their court of protection at some point.

COMMUNICATION is KEY –over the years HCC have got it wrong several times by not telling families what is going on – yet by involving families early in the process, appropriate, cost effect, needs led services will result for people with learning disabilities enabling them to have a better quality of life in the community, without any additional cost or in some cases less cost to HCC.

Case Study 2Often “service user criteria” is used even to get an assessment - some people are vulnerable but do not meet the criteria or parents have to actually refuse to care for them any longer in order to get any support at all. Quite often the only way in is to mention or quote a “Safeguarding” concern. This approach is not okay and needs to be changed.

Suggestion of things could improve above the situation

1. Make available, clear information on the criteria for services2. Publish list of allocation of hours/overnight care available to

family carers who are still supporting their son or daughter 24/7.

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3. Flexibility could be quoted e.g. 7 to 21 nights per year or 5 - 10 hours per week, depending on assessment of whole family’s needs.

4. Under the new Care Act Carers have a right to an assessment to work/continue in education/have leisure opportunities/and a break from caring and to have their needs met.

5. Holistic whole family assessments should follow on after an independent facilitated “Person Centred Plan” this could result in a much better outcome for all members of the family and at less cost to HCC.

6. How many whole family assessments have HCC carried out in the last six months?

7. How many carers assessments have been completed/or are under way since 1 April 2015, how many have resulted in increased services for either themselves or their sons or daughters?

Information about local services and support – its say this will be available in the LD Plan

Case Study 3 - Parent carers do not always know or are given access to information on local groups/services and support.Case Study 4 - If a person is funded by health they don’t always have immediate access to services, health pay the services directly and the carers and cared for are given nothing in writing to support their claim to these services. They are also taken off the register for support from Adult Services and are told they have to go through assessment all over again as they have no knowledge of prior support even though this person has had support from adult services prior to being transferred to health.Case Study 5 - I have to take day off work to attend events - if I know they are on – a lot of family carers still need to work, how can they be involved?

Suggestion of things could improve above the situation

1. Parent Voice have website of groups, activities, for young people/parents up to 25, when will this or another site be

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available for adults (people over 25)? Information needs to be equitable whatever your age/disability.

2. We need clear criteria from adult services for people applying for care. Why do you have to prove a risk due to vulnerability to start the process for extra support?

3. In the LD Plan Health and Adult services have made Joint Promises, yet in practice if funding is by Continuing Health Care (CHC) access to social care/information is not forthcoming.

4. Under the new pilot “My Life My Way” allows access to personal budgets – Health, education and Social Care. We understand there are only 5 families on the pilot when will it be rolled out?

5. When will people under health get assessed for adult services support?

6. Do HCC know how many people with LD living in Hampshire they provide services for? How many people are funded as “Out of County” placements? and the annual cost for each service.

7. Do you have a database of family carers so they can be sent relevant information re events, change of services, new services, web sites etc.?

8. The trouble is that parents get overloaded all the time, they have their own life to live and often have to support other family members as well as their sons or daughters.

9. Often people have to take a day off to attend course/ consultation events, can consultation be “on line” for working parents to be involved as well as physically having to attend?

HEALTH Annual Health Checks – The LD Plan says everyone is entitled to one.

1. How many people are registered with their GP’s and receive an annual health check?

2. Health checks even when done they can still get it wrong. Even when a person has needed and had a home visit for the appointment they still expect them to go into the surgery.

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3. There is a new drive to get GP’s to carry out annual health checks. People need to put in a complaint if this is not done or done well as it’s the only way to change things. Family carers need to know how to do this. Easy guide needed. Case Study 6

o Annual health checks are not fully carried out - someone gaveme a copy of the complete list and this should be available to all family carers.

o This should be found on the GP’s website. o We were told Learning Disability nurses in the community team

can support parents and service users to arrange pre-visits/discuss what will happen and can provide easy read documents. To get the contact number of the local team you will need to call adult services. Why is this not available on every GP surgery web site?

o Most LD liaison nurses only work 9-5pm Mon-Fri so not around at the weekend for emergencies – what happens if families or people need support?

We can see some things are working from the plan but not others.Good news stories:-

o A family from Basingstoke said that the hospital were fantastic and were brilliant with their daughter in an emergency. Suggested they send in a compliment as this is hardly ever done and services really need this.

o We are very lucky and have most of the support we need for my daughter but she is high needs and I wonder if we would not have as much help and support. My daughter just needs support with a person centred plan.

The Future, new ways of working and new initiatives

1. “My Life My Way” are trying to find families to try the personal budgets and managing them independently. There are still cases of individuals in services not receiving the best support. But things still go wrong but no one wants to take responsibility

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Case Study 7 - one lad had high mobility benefit but the supported living home that he lived in took the whole amount to pay for the mini bus that everyone in the home used and he only used twice a month. HCC were asked to attend his review to change this now but they didn’t want to. Case Study 8 – in the past “complaints” about services funded by adult services have resulted in the person with a LD being given “28 day notice” to quit the residential setting

Questions from the group.

1. How are HCC monitoring quality of good consistent, person centred care? The LD Plan centred on “good care and support” being paramount to the wellbeing of people with a learning disability. We have heard that a “peer mentoring” (self-advocates) scheme is being set up – will family carers be involved in monitoring services?

2. Under The Care Act criteria are national and selected by the government and all local authorities must abide by them. Please can we know what and how HCC will be assessing need for both people with a learning disability and family carers? What will happen to those that do not meet the criteria? Families are still waiting months for an assessment what is the waiting time?

Suggestion of things could improve above the situation

1. A list of the criteria to access an assessment. 2. A timeframe for a response that matches with business customer

services requirements such as 5-10days to acknowledge request. This should be used for requests for assessments

3. Clear information on the processes/ complaints procedures if you are refused support.

4. A leaflet with direct contact number for the local team.5. A web site and basic information leaflet/pack for all family carers

that is available in GP surgeries, give to parents as their son or daughter reached 14, even if they may not be able to access Adult Services, they still need detail of local organisations, Local LIG info and Self-Advocacy that could support them.

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6. Also reviews are often full of mistakes and when it is asked for via email the social worker refused but they do have a system that allows you to receive the review online which is secure. Can everybody be given this option if they wish?

7. Care providers need to be kept in the loop with information and LIG details, and LD Plan as many are acting “loco prentice” for health and other issues especially if the person has complex needs or family members are no longer around.

8. Monitoring health and support plans should be done annually. Can Family carers do this? They could then flag up any changes/ issues with Adult Services, this would save staff time and money.9.

9. A Community Nurse should have responsibility for the health needs of someone with LD in their areas as support workers are not trained to manage this.

Section 8 of LD Plan -Supporting Carers & Families

Of all the things that Carers and Families said would make it better in the plan, very few were in the promises, but even some that were in the promises are not being carried out. Please see the Case Studies and comments above.

We need to be involved, but feel we are not being treated as equal partners by valuing our knowledge and expertise. e.g.

My Life My Way have funded peer mentors, what about family carers being peer mentors for the families.

There are two people with learning disabilities from each LIG going to Partnership Board but only 1 Family carer representative from each LIG.

We bring issues regarding poor support/service, as we are likely to hear about this from other families, especially for those with complex needs, who are unable to communicate the issues they may have, to peer mentors/self- advocates.

Many carers would be happy to be involved in helping plan and develop new services, yet are not invited to events, as there seems to be no register of families for people with a

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learning disability who access Adult Services or Health Services.

Family carers are busy and cannot always attend meeting can we not use other means to consult/get their views head? E.g. Survey Monkey, email surveys asking for response to any issues/consultations about services.

Questions and issues that need to be looked into to help with involvement and better services for people with LD?1. How many people locally are on the register with adult services and are then people taken off of the register when they are closed? 2. How many people are known to the LD team and are they given current info even when they are not active? 3. The communication promise has not been kept. 4.We know social workers are being asked to do so much more and they are struggling to cope, it needs for people to constructively criticise/ complain to get better services and information, how can we become “the critical friend”?5. If HCC could use the voices of the family carers (they pay their rates and all have elected members) and could be a very effective “lobby” to stop local services being cut.6. Local teams have created local booklets but even when they were told, when it was a “draft” it needed up dating, they went ahead so it “out of date” Need website, where information can be down loaded as required. Can we have system, where people can send in alterations to details?7. The plan is fundamentally flawed and lacks honesty as you cannot promise things you cannot deliver-it just feels as though boxes are being ticked by HCC/ Police/Health etc.8. The plan was originally coproduced with service users and family carers. Each section is being reviewed to tighten up promises and to identify gaps in services/ support. It encouraged working together, but Cases studies from today do not support this.9. The plan has enabled cuts but not kept the promises.10. How many families are involved in monitoring the services?

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11.What will happen when people with LD reach the age of 60+?Older peoples care homes are not equipped to support people with LD, what are Adult Services and Health planning to redress this issue? 12.There needs to be consistency of service without the fear of receiving a 28 days’ notice to leave if family carers complain too much.13. When looking at cutting services the local authority should look

at consulting family carers, what is needed most and ideas of paying for some services themselves such as PCP.

14.Over the past decades services for people with learning disabilities have only improved because family carers, set up local day and evening services to fill a gap in provision, creating local charities to raise funds to continue these services, they are the lifeline for people with learning disabilities to lead a fulfilling life and enable them to live in their local communities. How are HCC going to support local groups in the future, in many cases funders need “match funding” from local authority for before they will fund?

Health promises-Health need to ask permission for Parent carers to be involved, is this happening for everyone? How can you prove this?Is any training given to GP’s re Annual health Checks about identifying Family carer so they can be involved?

Parent carer access to LIGS:How to get more input from parent carers into LIG and LDPB

Info and database for carers to get to LIGS or encourage them to email issues for the topic to the LIG rep.Agenda to be posted out two weeks in advance of meeting1spokesperson every three monthsParents have trouble getting to the meetingsNeed more time for parents to ask their questionsNon personal stories- have to generalise.

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Janet Chierchia – notes 20.6.2016

The Police will make sure: Phil Lamb

Through services working together people with a learning disability and their families get the support that is right for their individual needs if they are witnesses or victims of crime, or break the law. 

 The police continue to work closely with the Crown Prosecution Service (CPS) and victim support, to support people who witnesses or are victim of a crime.  Across Hampshire and the Isle of Wight the Police work in partnerships with local authorities to learn and understand further, the needs of people with a learning disability and always welcome feedback so we can make sure we provide the best support possible.

It works with others to continue to cut crime and protect the public. 

 This remains a priority for the Police and the Police and Crime Commissioner.  

It works alongside people with a learning disability and their families to stop hate and mate crime. 

 

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The Police continue to host learning disability hate crime events, attend partnership meetings and offer to support and visit local community groups and clubs across Hampshire and the Isle of Wight.  If someone with a learning disability or their family would like to contact the police or invite us to a community group or club that we do not know about then we would encourage them to get in touch. 

People with a learning disability and their families will see that the Police treat everyone fairly and with respect for their individual rights. 

 This remains a priority for the Police and the Police and Crime Commissioner. 

Passenger Transport feedback:

Kevin IngsThe following points provide an update on the promises for inclusion within your report.

Over 500 buses in Hampshire have now been fitted with next stop information following a successful funding bid to central government. This provides visual and audio announcements about next stopping points on the routes on which these buses operate.

We are supporting a disability/travel forum in the autumn as a means of engaging service users and bringing together service users/operators and local authorities to discuss relevant issues regarding bus travel

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In our regular liaison meetings with operators we take the opportunity to discuss the issues which service users with particular needs have in using local bus services.

Following our previous presentation to the local LD Partnership boards a number of service users now attend the Passenger Transport Forums which we hold in most district council areas. This provides service users with the opportunity to meet with local bus operators, hear what they have to say about their services and talk to them directly about any issues which they may have.

Advocacy will make sure:Alison Flack

It respects people’s carers and families

Advocates will always work in partnership with people’s families and carers, unless people ask us not to. Advocates will be open and honest about the advocacy role and how we work.

It shares information we have about services that canhelp carers and families

Hampshire Advocacy partners are all local advocacy organisations and know about other local organisations, we can tell people about other local services that can help them.

It makes sure information about our advocacy services isavailable to people, their families and workers from otherservices

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Hampshire Advocacy has a website www.hampshireadvocacy.org.uk information about independent advocacy in Hampshire is there and we have got a page about advocacy for people with learning disabilities. We also have leaflets and go to local events to let people know about advocacy. We are going to the Hampshire carers event on the 28th July.

Health response – Louise Osborne

Promise Health ResponseAdult Services and Health will make sure:Meetings are held to suit caring responsibilities There is a MOU with Hampshire Parent Carer

Network, Adult Services and Health to support this e.g. time of meeting etc and no meetings held during the summer holidays.

Community Learning Disability Teams share information and support carers and families to access the right information when they need it

Where a person with a learning disability gives consent families are part of reviews, CPA process, CTRs and Blue Light Meetings.

Community Learning Disability Teams think about carers needs when they are helping people with learning disabilities plan their support. Treating them as equal partners by valuing their “knowledge and experience”

Families and carers are involved in circles of support for person centred planning

Community Learning Disability Teams know what is available locally for people with a learning disability and families

Hampshire Commissioners and Service Providers are developing the local offer.

Underpinning the SHIP TCP is the ethos of co-production across Children’s, Young People and Adults and involving people at all stages of commissioning and planning.

Views from young carers are listened to and health work closely with the young carers forum.

Carers of people with learning disabilities are respected, supported and listened toYoung Carers of people with learning disabilities are supported and listened toCarers of people with learning disabilities are able to have their say in making local services betterCarers of people with learning disabilities are involved in helping to plan and develop new servicesHealth will also make sure:Staff in doctors surgeries are aware of the need to register carers on their GP records and to support access to health checks to carers over the age of 40

As part of the SHIP TCP we are developing LD Friendly GP Practices in which we will ensure that register carers are on the GP records and to support access to health checks to carers over the age of 40. This also sits under the Early Intervention & Prevention Workstream.

Adult Services, Children’s Services and Health will make sure:They continue to look at ways they can work together to improve transition into adult health,

This is happening through My Life, My Way whole life planning.

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education and social care services

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