Wendy, Moira Goodey Manager of Norwich Mind, Rach, Pam,

Philippa Russell Head of the Standing Commission on Carers. Ivan Lewis the Care Minister.

continued...................................

The meeting came about because in January this year a member’s husband died and within 10 days she received a letter from the DWP saying that they were sorry to hear of her loss but she needed to make an appointment to visit the office about going back to work. This lady is 58, severely disabled and her GP has told her she will never work again. As a group we were so incensed that I began to email the office of Ivan Lewis, The Care Minister until  eventually a meeting was arranged. A few of us from our website decided we would like to go and talk about some of the difficulties for carers in 2008. One member travelled from Teesside and two from Norwich and one from London.

On 30th April we met Ivan Lewis in Westminster and instead of half an hour we were with him for well over an hour. We took our Chill4us Care Watch report which was an accumulation of our members concerns and difficulties.

Wendy spoke about the member whose husband had died and we were told that this would be referred back to the DWP. We suggested that there needed to be a time lapse of up to 12 months for carers after the person they care for has died. I told him of my concerns for carers living in rural areas and asked when the 24 free phone help line would come into force. We were told not until at least the middle of 2009

Moira Goodey the Manager of Norwich Mind spoke at great length about carer assessments and the lack of help after an assessment. Also she spoke about the difficulties that a carer will face because of the new 10p tax ruling.

 Pam said….We deserve Respite, Recognition, Remuneration and , Respect.    Carers desperately need respite from their caring role. This means good quality respite and not, for example, an agency worker walking our son or daughter around a supermarket for something to do because there are no weekend day services available in the local authority. Direct Payments are not the answer to respite for all carers. Good quality, suitable respite and an increased Carer’s Allowance are top of the priorities Desperation is a carer’s lot. Desperation is not too strong a word. Initiatives, strategies and modernisation, while meant to improve services or reduce them, mean more work and less help for carers.

Helping carers into employment is not the answer for all carers. Alternative therapies are not the answer for all carers. They do not provide respite or practical help. Independent Living Fund’s eligibility criteria have changed, making it more difficult to access. Accessing social care is a constant battle. We face procrastination, inefficiencies, lack of services, misinformation, and incompetence, unreturned ‘phone calls, cancelled or late arrival at appointments, lack of flexibility and very little carer involvement in planning services. Carers feel that even when a box is ticked to indicate a carer was involved it usually means minimal involvement for the purpose of ticking said box.

 Rachel spoke about…….Direct Payments Direct payments have made a big difference to the lives of both carers and their loved ones. We urge the government to acknowledge that:

 • Direct payments are not suitable for everyone

• Social Services should not pressure people into taking direct payments

• Local Authorities should be instructed to ensure provision of care services provided remain in place

 • Direct payments rarely provide the level of assistance for which they are prescribed

• The hourly rate given through direct payments should be enough to employ an agency worker for an hour, and include provision for weekend and bank holiday assistance.

Why direct payments are not the only answer-- The hourly rate given as direct payment does not cover the hourly rates of agencies, meaning less assistance is received than the payments are provided for. Assistance on bank holidays and frequently weekends cannot be paid for, as hourly rates are higher at these times and these cannot be afforded through direct payments. Councils in many areas, purchase the majority, if not all of local private service capacity. Where do carers find people to employ? Statutory sick pay and maternity pay must be given where appropriate, meaning that very little of direct payment is left to pay for assistance. Direct payments cannot be used to enlist the services of a family member living in the same house although these are often the people best placed to provide assistance. Giving carers the option to use direct payments is a great idea, but where does the respite care come from so that carers can actually use the payments? Direct payments can be made net of the charges carers are expected to pay towards their assistance. This assessment may not be correct, the carer may not have agreed with the information used to make the assessment, and yet the direct payment is reduced at source, leaving the carer unable to pay for your assistance. If a carer decides to become an employer, the administrative burden is great, time-consuming and worrying.

If they decide to use an agency to help with the payroll, this is costly and can reduce the amount of assistance they can purchase with their direct payments if they have to pay the agency.

Social workers are under pressure from managers to push direct payments and not provide care services. Some quotes from government advice leaflets on direct payments; “Each council will implement direct payments in its own way.” Why is this necessary? It reduces the obligation on councils to use them in the way they are intended. “You may find it helpful to use a specialised payroll service.” Carers are incredibly over worked, often stressed and frequently depressed. Should they be subject to a system that actually suggests the added burden of dealing with a payroll agency, not to mention the cost?

Mr Lewis said that the Carers Strategy would not be announced until the summer and would not be in Carers Week.

On 2nd May Moira and Wendy visited Mr Norman Lamb, The Shadow Health Minister for the Liberal Democrats and raised some of these issues with him. He wrote a letter to Mr Lewis to ask what action would be taken regarding some of the issues that had been raised. Mr Lamb also wrote to Alistair Darling the Chancellor to ask what changes were to be made regarding the difficulties that carers who are in employment face re the extra 10p tax burden. We felt that both Mr Lewis and Mr Lamb listened and had the best intentions for carers and we have since been informed that Mr Lewis was impressed with the amount or work that had been put into the visit by all the carers present.

 We are awaiting a meeting to be arranged with the Shadow Health Minister, Stephen O’Brien which again will be in London. These events took a considerable amount of effort from each carer to arrange for respite and transport, etc. The members of Chill4 spent a great deal of time submitting their points of view for the Chill4Care Watch. We are grateful for the support that we received from everyone.