‘Don’t tell us you’re sorry. Show us you’re sorry’
19th April 2016
Scottish applications to Skipton Fund to 2011
25th April 2016

The Financial review Group proposals accepted by the Scottish Government, included a Support and Assistance grant scheme, funded up to £1m per year.

The document can be downloaded on the ‘Downloads’ page, under ‘Topical documents’ on the right hand side.

Below is an excerpt showing the detailed proposal (Proposal 4 in the Final recommendation report), together with some commentary to explain further and provide context.


Proposal 4. Support and Assistance Grants SIBF Comments/summary
A new Support and Assistance Grants scheme should be established, with greater funding than the existing discretionary schemes. Scottish Government currently allocates ~£300k p.a. to the discretionary funds distributed by the Caxton Foundation – to allow sufficient flexibility and responsiveness to the new target group this should be increased to £1m p.a. and distributed through a new Grant scheme. This proposal has been accepted in full by the Scottish Government
The grant should be administered in Scotland, either by an existing Scottish body, or via a new body established specifically for this purpose.  SIBF have been proposing this for sometime since the publication of the Scoping Exercise
The scheme should be available to anyone in receipt of payments or their families/carers. This infers you must already be a recipient of funds from Skipton (or presumably Caxton) to be eligible
The scheme should have simple mechanisms for application and payment, and a transparent appeals mechanism which involves patient representatives. A theme consistently expressed by all group members
Any infected person, their immediate family (to be defined) and/or carers should be able to apply for grants from the scheme. Thus widening applicability
Grants could be provided for one or three years. Extending the payment timeframe, avoiding repeated applications
The demand on the fund should be monitored and funding adjusted to accommodate it if necessary. The initial years of operation may require increased funding. Increased funding due to the pent-up demand for help recognised.
All commitments made by the Eileen Trust, Macfarlane Trust and Caxton Foundation to make regular payments, including winter fuel payments, should be honoured by the new fund under the existing terms of payment. Honouring existing payments
We would seek to learn from the Thalidomide Grants model where funding can be used for certain defined activities.
Applicants should indicate what they wish to use the funding for, against a set list of activities/needs, and sign an undertaking
to use it for that purpose. Assessments should be minimised and simplified as much as possible.
Thalidomide Grant model has 7 defined activities:

1.      independent mobility

2.      home adaptations

3.      communications technology

4.      medical treatment costs

5.      respite

6.      personal assistance, and

7.      social activities

The UK Department of Health (DoH) agreed that individual Thalidomiders would not be expected to account to the DoH for their expenditure and would be free to spend it as they wished in order to meet their health and health-related needs


A set of ‘health-related needs’ were developed to guide Thalidomiders in their expenditure.


The Scheme should enable the grant to be used creatively – i.e. to provide a lump sum to certain recipients, or to ‘top-up’ annual payments where needed. The evolving needs of recipients should be kept under review and the fund adjusted accordingly to accommodate. Flexible use of grant welcomed
There should be minimal means testing – unless applicants significantly exceed available funds in which case those most in need should be prioritised. The group recognises that in order to channel appropriate funding to those in the most financial need, there may be the need for some residual means testing, especially
with regard to large additional sums of money.
Minimal means testing unless financial pressure from very high levels of applications.

Any move towards means-testing should be monitored very closely to ensure it only applies in’exceptional’ circumstances.

The Group acknowledge that this may require intermittent, random spot-checks on use of money to satisfy audit requirements. However, these should be kept to a minimum and only apply to
larger grants. The Group accepts that the audit requirements of the agency in question may make this unavoidable.
Minimal, intermittent, random spot-checks only on larger grants due to audit requirements.
The activities that this grant could be used for would need to be defined, but the Group suggests the following as examples of legitimate expenses for infected patients or their families {see below}: Summary examples for infected patients or their families:

1.      Treatment costs

2.      End of life costs

3.      Insurance

4.      Respite breaks

5.      Specified ‘home’ repairs/adaptations

6.      Debt/Money management support

7.      Essential household purchases

8.      Vehicle repair costs

9.      Re-training costs

10.   Funerals

11.   Counselling

12.   Tax assistance

13.   Child support (to be defined) of bereaved victim

14.   Complementary therapies

15.   Home help

  • Financial support whilst undergoing treatment.
  • Financial support for end of life care.
  • Travel/life insurance – to cover the additional premium related to the infection/s.
  • Respite breaks.
  • Additional health and mobility-related repairs and adaptations to homes.
  • Support with debt and money management.
  • Purchase of essential household items.
  • Support with vehicle repair costs to ensure people can retain their mobility and independence.
  • Financial support to enable people to undergo re-training.
  • Funeral plans.
  • Counselling/psychological support.
  • Tax assistance if in financial need.
  • Providing support to the children of the deceased where they would have had a reasonable expectation that an unaffected parent would have provided that support (driving lessons, education, and training).
  • Access to complementary therapies.
  • Home help to enable people to stay in their homes.

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